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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JoshF's picture
Replies 19
Last reply 5/19/2016 - 7:14am

Good evening all, hope this finds you well.

I have appt coming up Thursday for a consult on genetically modified t-cell therapy. I'd like to pose a question to anyone willing to respond. First let me give you info in case you haven't seen previous posts. I was on nivo for 6 months and pet/ct scan revealed roughly an orange sized tumor in abdomen and 2 smaller tumors in lower back/love handle area. I've researched the tcell treatment and I don't see anything regarding resection of tumor(s). I know in TIL they remove tumor to harvest, this trial is from blood. Anyways, if they don't remove tumor my family is opposed to this treatment and would like tumor removed and start an ipi combo with onclytic virus. My dad has been researching and says he found some info from Huntsman in Utah saying there has been success. My head is just spinning. What would you do if they say we leave the tumor in abdomen? These decisions are tough.

Josh

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

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DZnDef's picture
Replies 6
Last reply 5/18/2016 - 5:53pm

I just found this site today as my sister invited me to participate in a "fun run" they are sponsoring.  I know most of you have probably already noticed it.  I am posting it here because it is the easiest site to navigate about melanoma that I have yet seen.  It looks like the survival data is out of date (2009 - pre Yervoy, Keytruda, Opdivo), but it still told me worthwhile information about my own Stage IV disease.  Please let me know if this site has been discredited somehow.  It looks pretty legit to me (but what do I know).

I am linking directly to the Stage IV page (because that's where I'm at) but the previous page lists all the stages.  Also looks like a pretty up-to-date list of melanoma specialists (I say that because my own specialist is listed at his new location).

https://www.aimatmelanoma.org/stages-of-melanoma/stage-iv-melanoma/

Maggie - Stage IV (lung mets unknown primary) since July 2012

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Kim K's picture
Replies 13
Last reply 5/18/2016 - 5:14pm

In one month I will be 6 years stage IV - NED post surgery and IL-2.  Both my oncologists fired me as a client because I was soooooo boring, they had nothing to do.  Basically said, you know where you can find us should any issues arise but we really don't have to see you any more.

This is one of my best graduations yet!  I get to die from heart disease, stroke, or being stupid, or getting killed by "blue ice", or a pack of flying monkyes instead.

I am haning my hat on the long term survivorship of complete responders from IL-2.  We are still setting the survival curve.  Charlie, you better damn well join me you curmudgen...  I miss our hot tub parties with Barth, StanN, Don W, Carole K and the gang.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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dvd's picture
Replies 4
Last reply 5/18/2016 - 5:07pm
Replies by: DZnDef, Bubbles, dvd

Even after a couple of years of negative scans and a decreasing frequency of visits to my oncologist, I still stop by this forum every once in a while, just to keep up with what's happening in the melanoma world.It's encouraging to see posts like that from Kim K who are even further out after treatment responses, and nice to read the posts of others checking in, still NED.

In some ways, I feel like I no longer belong to "the group," having had a rapid and complete response of my Stage IV disease with the ipi/nivo combo. I no longer feel like I am a Stage IV patient, even though, technically, I am but with the post script "in remission" on my medical record. 

Several weeks into the clinical trial, when I first allowed myself to recognize the first signs of a reversal of my disease, I wrote a blog entry (http://daveschronicle.blogspot.com/2014/02/melanoma-time-for-stage-5.html) with a tongue-in-cheek suggestion that a new, Stage V category be added to the melanoma lexicon to represent those who have had a complete response to one of the newer therapies. I would like to think that Stage IV is behind me (even maintaining an awareness that recurrence, or a new primary, is still a possibility), and that the aspiration for the future is a natural progression for all Stage IV melanoma patients to a disease-free state of Stage V.

I've always been an optimist...

 

dvd

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AshleyS's picture
Replies 7
Last reply 5/18/2016 - 4:56pm

Today I realized something. Yesterday it was 18 months since I sat in a cold office at Mayo Clinic and was told I had 12-18 months left to live. 

A lot has happened in 18 months....

I went on chemotherapy - and failed chemotherapy. 

I moved my entire family (my husband and our 2 year old and 3 month old) from ND to TX to go to M.D. Anderson. 

I had a tumor harvested in case I will ever need TIL therapy. 

I went on the ipi/nivo trial - and got kicked off after 3 infusions. 

I saw success in my first set of scans.

I moved back home.

The combination trial that may have saved my life was FDA approved. 

I started Opdivo monotherapy.

I re-entered graduate school. 

I celebrated my 32nd birthday (and my husband's...and my daughter's 3rd....and my son's 1st.)

I received NED status. 

My husband and I bought a lake cabin we've always dreamed of owning. 

And with the realization that it's now 18 months later, I realize my sweet little boy is 18 months old!

And in between all these milestones, is "ordinary" life...Play-Doh, doctors appointments, bath time, treatment, dance class, naps, temper tantrums, hugs and kisses......

Keep on keeping on!

Ashley

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JoshF's picture
Replies 19
Last reply 5/17/2016 - 11:18pm

Hello again everyone. I saw onc yesterday after CT Scan. She said that mass on left side near intestines is not invading intestines but in tissue surrounding...which apparently is a good thing. The reading of the PET scan by radiologist said there was no concern with the high SUV uptake...appared muscular in nature which after the CT Scan Friday was confirmed. Though there appears to be two small spots in lower back. So we moved to options....surgery is a certain in both scenarios.

1. Transfer of Genetically Enginereed Lymphocytes. #01586403 So I guess you have to be positive for HLA-A2 antigen in your blood. They drew blood and I should know by Tuesday or Wednesday. They said it's 50/50 chance I'm positive. I have no idea what it is or means. Anyone have any insight into this trial? At first I thought it was a TIL trial. So blood results hinge on this...

2. Intratumoral Cavatak combo with Ipi. So I guess this is just ipi paired with injectable virus.

My onc likes both options at this point but wants that HLA-A2 test first because that could determine where suregery is done as Loyola University Medical Center has first trial. I have tons of questions that I posed to her that I'd like to pose here and ask anyone that can address please do.

1. Would TIL be a better option? I'm not sure I can get into that but shoud it be explored. Though she likes the promise of it, I'm not in a place where this treatment is needed.

2. I responded to ipi in past but apparently Nivo had no impact on me. Can the Nivo/ipi combo possibly provide a response...or keytruda? Some other type of combo. And can you respond a 2nd time to ipi. Her response was yes, people have responded 2nd time go around with ipi and have had durable responses. Clearly she feels ipi combo with virus is best path for me. I haven't see results but honestly I've been so beat down that I haven't looked.

3. What else is in pipeline that can provide benefit for me...a durable response. Apparently there is quite a bit but she never wants to put cart before horse. She feels these can be 2 good options that put me on the right path...I just can't help but wonder if there is something more.

Anyway, I'd like surgery ASAP. This seemed to come on quickly and like many of you I'm just plain tired of this shitty disease. I pray daily for all of us and give thanks for this forum. I try to peek in every now and then because I like to check in on people but really just stick to Celeste's blog. I saw that Charlie is back and it just pisses me off and make me even more upset. I hate to see the struggles but appreciate all the support...

Josh

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

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/17/2016 - 9:38pm
Replies by: jennunicorn

Hi everyone I aplogize in advance I do not have melanoma, or I don't think I have melanoma yet.   My question is with regards to how fast melanoma grows.  I noticed a dark spot on the bridge of my nose in 2011.  I thought it was dirt at first and picked at it.  It never went away.   It has been there since 2011 and from what I've observed it has not changed or grown.  It does get lighter and darker depending On the time of year and my skin tone.   I became somewhat health anxious when my friend was diagnosed with melanoma and this spot on my nose stuck out.   I have been to the dermatologist several times since this spot appeared and my last visit was in Feb.  They have looked at it but never removed it or commented on it...  In 5 years if this was a sinister mole... Would I be seriously ill by now and would it have significanty changed? Thank you all

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Charlie S's picture
Replies 6
Last reply 5/17/2016 - 8:31pm

According to the Geneva Convention, nations at war with one another are not supposed to use chemical weapons against their opponent.

Thank goodness that does apply to me as I wage war against melanoma.

My central line has now been stuffed down my neck, I've had a super close shave by a barber and been lathered up with super lotions and am slamming fluids  in anticipation of another go around with IL2 starting with bag 1 at 7 a.m.Monday.

Most people probably would have used their upcoming days more wisely, by spending time with family, eating healthy to boost the immune system and devoting time for quiet contemplation; but I went out with a bunch of fellow veterans last night and we all got rip roaring drunk and wiped out a grill full of baby back ribs.

The cab driver was banging on my door this morning for a while to get me up so as to  drive me to the train station.

So up next is my second week "on".  Take as many bags as I can, wait two weeks and scan.

I'm thinking out loud here, but many people diss IL2; but it has its' place.  One of the largest complaints I see here on this board is well it is toxic and diminishes the quality of life.

Show me one cancer patient that has said ANY surgery or treatment is easy.

Okay, enough of my editorial, but I want to throw in one more thing for all here to consider and this is to read a post I made six years ago................and most of all, the responses.

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/stage-ivroll-call-undead-please

 

And as one poster here well reminded me about my opinion about melanoma  "I am here to chew bubble gum and kick ass and I'm aaaaaalllllllllllllllllllllllll out of bubble gum"
 

Cheers,

Charlie S

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Replies by: Bigdaddy5, Linny

 

Hi All:

Got some news today.  I received my Decision-DX result back as positive result for Stage 2 "Normal Confidence" (meaning that according to 31 genes, I now have a 69% of recurrence within 5 years compared to other Stage 1 and 2 patients).  

This is also following my testing postive for the NRAS Q61k malignancy  few weeks back - which isn't really all that useful info to know - until something metastisizes.  Celeste has been schooling me with her blog - and I appreciate she is on my side.

I had a successful wide-local-excision surgery February 24, 2016 with a negative SLNB result (right axilla).  Thought I was "good".  Odds are - perhaps not. Was something missed in the lymph nodes?  What is the best strategy to wait for this battle?  

It's like a large, ominous dark cloud forming overhead.  There's a 31% chance the storm might blow over - but it's odds-on likely to cause some problems for you. And when you factor in the positive NRAS malignancy - when the storm comes - the umbrellas everyone else uses just might not work for you.  They are thinking about inventing one for you (and the one's like you), but it's just a concept now - but when these umbrellas are designed - they might work real well.  Just hope it blows over.  One in three, you bet on worse odds than that before.

Doctor now ordering a MRI.  My first three month appointment is mid-June.  Trying to get myself in "hey kids - the glass is half-full" mode.  I will - but I thought I'd reach out to my friends in the cloud for some advice.

A little irony here.  My 76 year old Dad suddenly died about a month ago.  Healthy as a police horse (not taking any pills, not being treate dfor anything) and he just suddenly died of a heart attack in front of my Mom.  We consoled her and said that he did not suffer in that he did not see it coming - and yet it is like he stepped off a curb and the bus hit him.

Conversely, me on the other hand.  I feel like I am getting plenty of forewarning that a big storm is coming.  It is my hope that perhaps detection of an early metastasis means that treatment will be more effective.  Not sure that's so - but my observation just got upped with an MRI order for my pelvis and chest.

Thanks for listening.

Sincerely,

Neil D

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The WOW first! Because we all need to know that even when it looks like there is a set back things can still work out.

In January of this year my Mom's MRI was still showing all 28 brain tumors that were treated by gamma knife.  This last week she had her 3 month follow up MRI.  Her radiologist only saw the area of her brain where the craniotomy ocurred and one tumor that was treated in August of 2015.

Nothing else was visible! Nothing!

So, either the remaining evidence of the 27 treated tumors is completely gone OR they are now so small that the MRI can't "see" them.

HISTORY

My Mom, 78 year old, was diagnosed with Stage IV in November of 2013. We didn't know it at the time, but she also had 3 brain mets that the radiologist missed!  Lucky for us we saw a second and then a third opinion. The third doctor had his radiologist look at her MRI and they found 3 brain tumors. (Even I knew there was a problem when I saw the screen...) 

My Mom ended up having not 3 on the MRI.  8 of 9 brain mets were gamma knifed in early December of 2013. The radioncologist missed 1 of the 9, but we would not know that until April of 2014. 

She started Yervoy 4 days after the first gamma knife treatment and did really really well. She only did 3 of the 4 infusions and got colitis, but even with that we saw a huge decrease in the subcutaneous tumors.

Unfortunately, we found in accidently (another misdiagnosis!) that my Mom had 17 more brain tumors on top of the ones treated in late 2013. Needless to say it was a bit scary, but we didn't know there were that many. - We had switched all of her care to USC in Los Angles when we were told by a neuroncologist that we need to wait and see how the new tumors progressed before we talked about gamma knife. (Idiot!) - Within 24 hours we saw her new radiologist and we have been thrilled with her care and the results.

A year or so went by and my Mom had great results between the Yervoy and the gamma knife, but did had a reoccurrence that needed to be treated with a craniotomy in June of 2015. We then found out that she had another brain tumor in August of 2015, which was treated with gamma knife. She started Keytruda in September of 2015. - My Mom had few side effects from all the treatment, with the exception of colitis and thrush. She went back to the DMV and retook all of her tests after the gamma knife treatment and has been driving since early 2015... No cognitive issues to report. Thank Goodness!

Can't recommend her doctors or USC in Los Angeles enough. I can't imagine that she would still be alive or have all of her faculties without them.

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beans920's picture
Replies 2
Last reply 5/16/2016 - 10:52pm
Replies by: beans920, Anonymous

Just looking for any thoughts out there.  Spent 2014 under the care of Yervoy.  2015 spent recovering  and had a spot on my rights side of sternum begin to show up again byOct.2015.  Had 7 doses of radiation into November and a checkup in Feb. 2016 showed it was dead.  Oncologist wanted to see me in 6 months and I  said 3 is fine with me.  Cscan on Monday and appointment today shows the spot is back and active.  Must look to surgery or cryoablation.  Anyone out there have cryotherapy on bones or tumors on bones or on chest.  Mayo is my port of call.  Thanks

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Anonymous's picture
Replies 9
Last reply 5/16/2016 - 8:26pm
Replies by: Kare83, Anonymous, ldub

I was checking my moles and I've never checked my scalp before because I have thick medium length hair.

I have about 4 moles on my head but this one stood out because of it's darker centre.

Does this look like something I should get checked out in your experiences with seeing Melanomas.

Here's the image

http://imagizer.imageshack.us/a/img921/304/6JtT9d.jpg

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Has anyone developed lymphedema NOT caused as a result of surgery and/or chem/radiation?

 

Is Lymphedema an indicator of cancer in the absence of surgery and/or chemo/radiation?

 

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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