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 6
Last reply 2/6/2017 - 4:36pm
Replies by: Anonymous, iskitwo, casagrayson

I had melanoma on my foot a year and a half ago.  It was stage II, surgically removed, none in the lymph nodes so I've been Ned since then.  Recently I've noticed a small lump and some pain at the site of the surgery.  Should I be worried?  Can melanoma return at the original site? I know that it typically travels to the lymph nodes, in my case the groin, or to other organs but I've never seen anything about it cropping up at the site of origin.

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Nick C's picture
Replies 16
Last reply 2/7/2017 - 8:37am

Just wondering...has anyone tried holistic/naturalistic approach in addition to their drug therapy, i.e, supplements, juicing, coffee enamas, detox, essential oils, etc? If so, which ones?


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John Bruno 2613's picture
Replies 2
Last reply 2/5/2017 - 10:36am
Replies by: Anonymous

Hello my brother recently had malignant melanoma with a level 1 surgery. He is doing well, but had to get another mole removed this mole came back as a junctional lentiginous nevous, however, it extends to one peripheral edge of the specimen. My question is should he have it re-excised to clear all the margins even though it is benign? What are your guys opinions and experiences. Thanks!  

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Hi all - Came on here last night to post but ended up in a river of tears - for Rita (Charles), for Judy (Vince) and all the newcomers ... so many new cases - it's pretty distressing. I feel for all of you!

For what it's worth, I'm going to update on my sister Leisa.

Brain MRIs and thoracic CTs are running about 6 weeks apart and latest CT report is in. Previous showed major shrinkage everywhere and several organs were already clear. Latest scan reveals more clear organs, now including pancreas and lungs. The lungs are a big one - at height of progression, there were about 8 tumours showing - all that's left now is an area of partial lung collapse.

Liver and spleen are still showing multiples but all have shrunk. Bones are also still showing multiple "sclerotic lesions" but predominantly in the spine (no surprise, it invaded just about all of the vertebrae) - T12 is totally collapsed and T5 is partially collapsed (she lost two inches in height when they went). Report now is not even noting other bones that were compromised (several ribs, right arm just below shoulder and right femur had large masses), so, we're taking no mention of those as good news.

At one point, a tumour in the spleen was so large, they couldn't tell if it was growing from the spleen or the kidney and both kidneys were "lighting up" but they're now referring to these areas as "bilateral renal cysts" ... there has been no change in their size. Considering everything else has shrunk or resolved, I have no problem believing these are cysts :)

And last - no new mets - no progression, only regression.

She's now halfway through a clinical trial of 24 infusions of nivo only and left yesterday for a winter getaway in Puerta Plata - yayy!! That's the first time she's been well enough to travel in two years.

So, we're "quietly" hopeful but always aware of how tenuous a great response can be. I'd love to know that NED is in her future ... but all I do know is that - for all of us, mel patients or not - all we have is today, tomorrow is unknown.

Best wishes and thoughts going out to everyone on here - please, be as well and happy as can be!!

Barb

 

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Patrisa's picture
Replies 8
Last reply 2/5/2017 - 11:23am
Replies by: Bubbles, Patrisa, Anonymous

Dear friends,

guess it's our time to worry some more...

A year after starting keytruda, my father has had another pet/ct done... His known tumors are COMPLETELY gone, no uptake, but the report says a suspicious change in one of his ribs... No further info on that... My father was in good spirits when he came from the doctor, said everything was ok, the doctor was already familiar with pet/ct results,  he continued with keytruda, so i was shocked when i read the report which came in today...

Does that mean he progressed or can it be other stuff? He hasn't had any trauma to his rib cage, what else (benign) could it be?

Can keytruda work through the 'new' stuff, or will he have to switch to something else?

There seems to be no plan of action to really see what is going on, they plan on waiting for another scan in three months i guess... 

Should we push for something sooner? What would that be? Biopsy? Radiation?

Thank you so much for any info...

Take care everybody...

Love,

Patrisa

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Judy Steven's wife's picture
Replies 12
Last reply 2/14/2017 - 8:37am

Hi, I'm new here and have been reading a lot here already. My husband is diagnosed with stage 4 melanoma in the beginning of January. I thought he'd had a stroke, because he started being confused and had double vision. MRI showed mets in brain (one big, some smaller ones), CT and PET showed mets in kidney, adrenal, thyroid and lung, and some in lymf nodes in body. Had WBRT for 10 days and that seemed to work, he got less confused and is more clear again, luckily..... quite scary when he was so confused, he also had swelling of the brain and steroids helped with that. Now we are tapering off the steroids in order to start with ipi/nivo. We are a little nervous about that, read some good reports and dramatic ones. My question is, is there anything you can do to support the body during the immunotherapy, any additional therapies, certain foods, whatever may help to prevent side-effects. Any experiences?

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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I wish I could continue to fight for you all, I will find some way to give all of my energy to push research and find a cure to help................thank you.  This is hard right now, but I'll find a way.

Rita

Rita

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Hi, I am new to this forum and was recently diagnosed with stage IIIc Melanoma in December 2016. I was just wondering if anyone has any reviews of Yervoy/ipilimumab as adjuvant treatment to help prevent reoccurance? This is what is being offered to me as a treatment option and just want to hear from some real people instead of just what you read online in statisitics and press releases. Below is my Melanoma story to date and would love to also hear form people in similar situations and stage. 

In spring 2015 when I was 35 years old, I had a melanoma in situ removed from my left upper back. Now in December of 2016 I was diagnosed with metastatic melanoma in left axillary lymph nodes. I had MRI, PET/CT and all they could find was the one left axillary lymph node area with cancer (4 matted nodes). No other primary tumor. It seems like this has made staging difficult. I underwent lymph node disection about 3 weeks ago and am healing up fine. I've been having doctors tell me about spontaneous regression and they think this may be what happened to my primary tumor. Or it could have even regressed before 2015 when I had the original removed making it appear to be in situ by the time it was removed. All theories, but even my dermatologist suggested the same yesterday when I was there for followup. 

Please, I would love to hear from others who may have been told similar or who have used Ipilimumab and hear your experience with the drug.

Thank you in advance for your comments!

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Julie in SoCal's picture
Replies 7
Last reply 2/5/2017 - 5:49am

Good morning Friends!!

It's been awhile since I've posted.  It's been a long couple of months.

I have just finished the Hep C meds and after blood tests, should be considered "cured" of Hep C (isn't that amazing!?!). While on the Hep C meds though, my joints and bones increasingly ached and became swollen.  The Liver Doc I was seeing for the Hep C had never seen anything like this.  But we (me, liver doc and Rock Star Mel Doc) figure somehow the Hep C treatment triggered an inflammatory arthritis.  The plan was to continue the Hep C meds and the treat the inflammatory arthritis with NSAIDs and pain killers.  Unfortunately, I'm now essentially handicapped as I can barely walk or sit or stand without a great deal of pain.  If one joint doesn't hurt another does.  I am the tin woman in the morning.

So on Monday, I'll make a pilgrimage up to Santa Monica see the Rock Star to talk about what's next.  I still have a stable and small lung met, and another intransit has popped up, so Mel is still alive and well (albeit small and slow).

My original plan was to join a clinical trial for folks who have progressed while on Ipi / Pembro.  I figured that this was my best shot of kicking Mel completely to the curb. But with being handicapped by the inflammatory arthritis,  I'm not feeling like I have the margin anymore.  So I'm thinking VATS to remove the stable lung met and WLE to remove the intransit.  This will render me NED (and therefore ineligible for a clinical trial) but should give me more options to address my knees, hips, back and shoulders with steroids or ???

I've never been wild about getting into a knife fight with Mel, but...  What do you think?

Grateful for this community!

Shalom!

 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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I'm newly diagnosed Stage 4 Melanoma as of mid January '17. I'm interested to hear how folks have navigated their way through treatment options that are a trade off between toxicity risk and higher outsomes versus less toxicity and good but not as high of an outcome. Other than melanoma, I'm in really good health, the tumors are in my lungs and haven't traveled yet. 

See below for the options. Really appreciate the advice. 

Recommended Approach 1 - Combination treatment
Drug 1 - Yervoy (same as Ipilimumab)

Drug 2 - Opdivo (same as Nivolumba)

% Toxicity (55%)
Mortality           1%
Severe              10% 
Other                 40%

Response Rate
57%

Combination Treatment Abstract - Yervoy and Opdivo

http://investor.bms.com/investors/news-and-events/press-releases/press-r...

Recommended Approach 2 

Drug 1 - Keytruda (Pembrolizumab)

% Toxicity
Mortality           1%
Severe              10% 

Response Rate Alone
40%

Drug 2 - clinical trial (phase 3 with placebo for 50% of group)

Response Rate with trial ~ 50%.

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Anonymous's picture
Anonymous
Replies 0

Found out today that I will be starting trail of Glembatumumab vedotin & Varlilumab on Thursday.  Gald to finally hear the news, but also nervous to say the least.  Paul, have you started your trial yet?  Keeping faith that this one just might be the answer!!

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Aloha14's picture
Replies 3
Last reply 2/7/2017 - 6:10pm
Replies by: Aloha14, Janner

Has anyone had Melanoma start as a blister that has liquid in it? I accidentally broke a blister that I didn't even know I had and all the fluid came out. I'm getting the area on my leg checked next week but just wondering if it could of been the start of another melanoma. 

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brendon's picture
Replies 8
Last reply 2/3/2017 - 5:20pm

Hi there, this is my first post here. I am impressed by the knowledge and support demonstrated on this site. I was recently diagnosed as stage IV following a recurrence of a stage 1 on my leg 10 years ago. Sentinel node biopsy was negative at that time. There is now evidence of metastases in multiple lymph node beds in the groin and abdomen but no evidence on major organs.

I am now in treatment decision mode and going back and forth in my head between starting more conservatively with anti-PD-1 monotherapy (Opdivo) or going more aggressively with the combo (Opdivo/Yervoy). I am interested in hearing about experiences and factors I might consider in this decision.

Thanks,

Brendon


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Anonymous's picture
Replies 2
Last reply 2/3/2017 - 1:33pm
Replies by: Anonymous, Bubbles

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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TamSchubert's picture
Replies 12
Last reply 2/4/2017 - 10:43pm

Hey all,

My husband was recently diagnosed with Stage IIIB, and may now be stage 4.

His primary tumor was on his *left* mid-upper back & only 0.82mm in depth, non-ulcerated. Despite the shallowness, it spread to a sentinel node on the *right* side (2.2mm tumor in node, still fully encapsulated). Two left nodes were tested, and were negative. A full axillary nodal dissection was performed on the right side, and all nodes from that surgery were negative (in total, one positive node (the right sentinel) & 28 negative nodes)

His first PET/CT scan showed two nodules on his *left* lung, 2mm & 9mm. Our oncologist told us they weren't metabolically active & didnt take up the FDG tracer. He booked us for a follow up CT in two months, and said the nodules were too small for a needle biopsy.

He did NOT say that he is stage 4 yet, and seemed relatively nonchalant about those two spots on the left lung. No VATS procedure was offered, just a follow up CT.

We opted out of Interferon in November because he only had one positive lymph node & a relatively shallow primary tumor with no ulceration. We instead chose the "wait & see" route - mainly because the risk/benefit wasn't worth it (I was 5 months pregnant at time of diagnosis, and we wanted him to maintain his quality of life while we prepared for our first little one.)

However, now that these lungs spots have been seen, I don't know if the "wait & see" choice is the best anymore. Our oncologist didnt seemed too worried about them & didn't mention starting interferon or any other therapy yet, but I'm beside myself with worry.

Has anyone else had benign lesions on their first PET/CT like this?

My husband does work around a lot of things that could cause lung issues, and has a history of lung infections including a bad cause of walking pneumonia that resulted in a large peel in his right lung - but it is the left lung showing these nodules. We were told it is fairly likely that these are benign... but we really don't KNOW. I am now 9 months pregnant & beside myself with worry. We contacted MD Anderson & have had his scans and reports sent - we are just waiting to be scheduled in there.

I want to push for a VATS procedure, but it wasn't even mentioned as an option to us at our last visit. I only learned about it after we left & I began researching independently.

Anybody with experience in this department?? I cannot stop worrying about these lung spots.

 

Tam S

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