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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Tracyyy's picture
Replies 12
Last reply 1/8/2018 - 9:50am

Hi all, my mum was diagnozed with melanoma in April 2013. Until the end of November all the regular scans were clear, then my mum felt an enlarged lymph node in the groin. Last month they removed it surgically and the biopsy results came back as melanoma in 3 of 6 nodes. The surgical team suggested PET scan, then local radiation in the groin and immunotherapy. However, the melanoma specialist we are seeing does not agree and suggests watch and wait and scans every 3 months. The only approved treatment for stage 3 in my country (Bulgaria) is interferon but he is against it. I know about the FDA approved treatment and I am so dissapointed that our options are so limited here...I know that watch and wait is also an option but I prefer us to do anything we could. I have read so much until now, even the doctor today asked me if I studied medicine, but I think being informed is the key. I also emailed some clinics in Israel as they apply some of the treatment approved in the US.
So has anyone been trough radiation or watch and wait for stage 3? I known it is an individual choice but I will apreciate some advice. I also know that there are many stage 3 and 4 survivors here which gives me hope.

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SRVilly's picture
Replies 13
Last reply 1/7/2018 - 6:37pm

Hello all!

I first want to thank you all for all your posts over the last year and a half. This is my first post, but have been reading every day. 

Here is a quick overview. 48yo, Light skin, red hair, many freckles and moles, and multiple sun burns throughout my life. Summer of 2016 had a small mole on my right leg change ever so slightly. I’ve had multiple moles removed over the years with no issues. Went to my derm, she did a shave biopsy like all the others. Well to all our dismay, malignant melanoma. It was .95mm, no ulceration, clarks IV, mitotic rate of 5. Not great, but not bad. Did surgery with clear margins and a clear SLN biopsy...all (should be) good.

Fast forward 1 year to summer of 2017 and I feel a small bump on right groin. Did biopsy, yep, melanoma. After much discussion, did the CLND. All 14 nodes were clear except the original. Did PET and MRI of brain and all is clear. We decide to do watch instead of meds due to history of colitis.

Went for my 4 month CT and my right exterior iliac node has grown to 2cm. Everything else was clear. Did a biopsy and sure enough, melanoma.  My onc decided to do another PET to double check and found multiple, 6-8, spots under 1cm on liver. She then ordered MRI in liver to double check and spots are positive.

Needless to say I am very disappointed/distressed with this outcome. I am B-RAF negative so am starting Opdivo or Yervoy/Opdivo combo as long as I can tolerate next week. I have been reading many positive stories, but I am just looking for some advise/words of encouragement to help me through the next week until I can start treatment. I am really having trouble wrapping my head around how fast this has progressed. 

Thanks again for all you all do and all the help you provide. I hope you all have a blessed New Year and look forward to your replies.

SRV

 

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Hey warriors! I hope this finds you all kicking some Melanoma butt!

I just finished the trial of PV-10/Pembro yesterday and will be transitioning to Pembro only now.

Prior to this last round of PV-10 I completed head, neck, and axillary ultrasound with no indicated need to biopsy anything per the radiologist. The tumor injected with PV-10 was greater than 4cm (40mm) x 3.9cm (39mm) when I started and now appears to be little more than a few small lumps of dead tumor. The PV-10 has not been a pleasant treatment but if it did this to the injected tumor...who cares...what's some searing pain and interesting purple markings amongst friends? 

More definitive answers will follow after my CT and brain MRI later this month.

The Pembro continues to be very manageable and I'm optimistic that it is doing its work in conjunction with what PV-10 has done...but again, scans will tell. This round seems to be brining the usual aches and pains in my joints but no chills or fevers (fingers crossed) yet. All labs have remained almost totally normal thus far with a little deviation in WBC here and there. Importantly, thyroid, liver and kidney function, and most every cell count has stayed in the normal range. 

Overall, the team at MDA appears happy with what has transpired so far with my results in this trial...but they also want some imaging to confirm what is actually happening. There is no denying that the injected tumor has largely disappeared (although I have an ulcer that the PV-10 continues to leak from and an interesting scab that has formed over the tumor area...I have been assured this is normal). 

If anyone has any questions about PV-10 I'd be happy to try to answer and explain what the experience has been like for me...of course if the scans show that the infraclavicular node mass has resolved I'll be their loudest spokesperson! I suspect we'll see more trials coming down the road with it.

I hope you are all fighting hard, and taking the battle to this most devious invader! Happy 2018 and much health to you all!

Tex

Tex

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/6/2018 - 3:45pm
Replies by: ed williams

Abstract of article in latest Science journal

Cancer immunotherapy

Resident gut bacteria can affect patient responses to cancer immunotherapy (see the Perspective by Jobin). Routy et al. show that antibiotic consumption is associated with poor response to immunotherapeutic PD-1 blockade. They profiled samples from patients with lung and kidney cancers and found that nonresponding patients had low levels of the bacterium Akkermansia muciniphila. Oral supplementation of the bacteria to antibiotic-treated mice restored the response to immunotherapy. Matson et al. and Gopalakrishnan et al. studied melanoma patients receiving PD-1 blockade and found a greater abundance of “good” bacteria in the guts of responding patients. Nonresponders had an imbalance in gut flora composition, which correlated with impaired immune cell activity. Thus, maintaining healthy gut flora could help patients combat cancer.

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edward989's picture
Replies 4
Last reply 1/6/2018 - 3:08pm
Replies by: Anonymous, ed williams

Recently, the newest study made a step forward in treating Melanoma with use of treatment called anti-PD-1 therapy. It is a threatment that uses TNF-alpha protein, which rases anti-tumour immune responses in samples of human melanoma.

Best,

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Jvlie's picture
Replies 4
Last reply 1/6/2018 - 1:17pm
Replies by: SABKLYN, Fen, Jvlie, Janner

Hi community,

In September i found i have melanoma. Since then i have my moments, i try to still positive but the doubt it's a very dificult thing.

My melanoma have 0,8mm; 0 mm2 (mitotic rate), and it's not ulcered, no vertical grow, linfocity brisk.

I think because the chances now it was a 1b? It is correct?

I has the safety margin and i have a big scar on my chest, also did a biopsy SL, but i don't now the resoult yet, and this is kill me, i pass all day reading this about melanoma, i think i still hypocondiac, because if i still any pain i thing is related.  How do you lead with this?

I always considered myself an heathy person and now i have afraid to lose it...I now it's commun but i only have 32 yeas old?

Can you help me please?

Sorry about my english, iam from Portugal.

 

Thanks a lot and good look

 

 

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SABKLYN's picture
Replies 2
Last reply 1/6/2018 - 12:23pm
Replies by: SABKLYN, Bubbles

For my 3A brethren who wrestle with this decision, here are the results of a 10 year study.  In the spirit of full disclosure, I had the procedure (right groin) 6 years ago and don’t regret it.  At the time, it was a big decision so thought this might help some with that choice.

https://www.mskcc.org/blog/definitive-study-shows-people-melanoma-do-not...

Hope,this helps!  

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murnaloo's picture
Replies 5
Last reply 1/6/2018 - 6:02am
Replies by: murnaloo, MelanomaMike, Anonymous

Hi all,

Just looking for any similar experiences (and, to be honest, some reassurance).

Yesterday I went for a run, then came home and took a shower. While drying my hair I noticed a mole on my left arm, just above my elbow, was bleeding. I was diagnosed with Stage Ib in April 2016 (a very thin melanoma) and had a WLE at that time.

I live in London, where the health system moves very slowly, but I did get an appointment with my GP this morning. He admitted he is no expert in melanoma and because it had been bleeding it was inflamed and hard to get a good look at.

I also managed to get an appointment with a private dermatologist this afternoon, who said essentially the same thing. He said he'd remove it for me, but can't until after the first of the year.

I have an appointmet with another dermatologist (where I had my quarterly follow-ups for a year) on 3 January.

All of these doctors have said waiting until 3 January is not a problem and with Christmas and New Year's coming up, I don't really have much choice.

I'm particularly freaking out because since February I have told the dermatologists at my follow-ups that this mole didn't look right to me. Four different dermatologists have told me it's fine over the past six months. I was also just at the GP last week, seeing the GP who does specialise in dermatology, and he said the mole was fine (and it was not bleeding then). It is on the back of my arm, so I can't get a good look at it, I admit.

I made the mistake of googling "bleeding mole" and am now having panic attacks. The dermatologist today said bleeding moles are more common than you'd think and don't have to mean melanoma. Of course, given my history, he said I should have the mole removed regardless. But, again, this won't happen until early January. I'm worried I will go crazy with anxiety before then. I am in the final nine months of my PhD and I have a lot of work to do in the upcoming weeks, but I can't focus when I'm so anxious and scared. I hate feeling like this.

I don't want this to ruin my Christmas (or my husband's Christmas, as I've essentially cried since I spotted the mole bleeding yesterday).

Does anyone have any advice or thoughts they'd be willing to share on how to cope and about what plan of action I should have?

Thank you and happy holidays to all!

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Replies by: wendywjj, Cindyco

My mum was dignosed as primary mucosal melanoma around cardia of stomach. The primary tumer is is a short pedicle polyps 5.7*5cm, basal part of tumor is around 2cm, it came from mucous layer. She had a ESD surgery first because thegastroscope biopsy result showed benign. But after the dignose with phthology, she received another surgery with a wider dissection (proximal gastrectomy).The pathology after surgery showed another small 1*1*0.5cm tumor in the same cardia area and 1 metastatic lymph node metastasis located in the right of cardia (out of 21  dissected lymph node) with negative up and down incisal edge. The surgeon said that my mum is a T2N1M0. Immunohistochemical result:Negative in BRAF, CKIT & NARS, PD-L1 22C3. The hospital also held a MDT to discuss this case. However, the next treatment suggestion is not clear, they are saying that this is a rare case and there is no clear evidence showing any effective treatment plan for this kind of mucosal melanoma.My mum is under observation now without any adjuvant treatment.Some doctors suggest to use interferon alfa or could even try PD1 (though it is not approved by CFDA yet now in China). I had checked NCCN guidelines, clinical trial results and articles... ...I know observation is a choice, but is struggling if we should use some medcine to "control" this a bit.

And also the smaller tumor(1*1*0.5), is it a satellite or in-transit or another primary? My mum should belong to stage 3, right?

How can I predict how invasiveness this tumer is? Would Ki-67 help to predict? Would a tumer genetic testing(showing TMB, MSI) help to predict?

How should I choose the treatment ? What should I pay attention to if my mum just wait and watch?

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Dave63's picture
Replies 4
Last reply 1/6/2018 - 1:06am
Replies by: Anonymous, Dave63

Hi, I had melanoma removed in August, since they have found a lesion on femoral neck and Bosniak type IIF renal cyst. My doctor said he will wait a year for follow up. Is this ok based on having had melanoma? Or should I push for further investigation? I’m worried that if I wait a year that these lesions will have grown or progressed. Just looking for a little advice.
Thank you.

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Hello Everyone,

My Doctor suggested this DecisionDx test to see how likely my melanoma is to return.  Has anybody had this test done?  What is the cost? Does Insurance cover it?  

Thanks for any comments.

Terry

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Aloha14's picture
Replies 4
Last reply 1/5/2018 - 5:09pm

Hi,

I haven't been on here for about 6 months or so. However, I had melanoma on my left leg which spread to one lymph node, and terrible problems with seromas after surgery. On Dec 9th was my one year mark and the PET/ct scan came back clear. Yeah, now for follow ups.

Unfortunately, I have just been diagnosed with invasive breast cancer today and so will be dealing with that for some time. 

I haven't read recent posts but I wish everyone well. 

 

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Lori Ann's picture
Replies 10
Last reply 1/5/2018 - 3:11pm
Replies by: Anonymous, Lori Ann, Jahendry12, CHD, Bubbles, adrianc

Hi All.  I was diagnosed in January, 2015 with mucosal melanoma in the nasal passage.  Since then, I have done 6 weeks of radiation therapy, then had 7 surgeries to remove tumors; I've done Yervoy, then Keytruda.  I had one tumor shrink on Keytruda, then no response.  I just finished 3 rounds of chemo (carboplatin and paclitaxel).  The tumors have grown and spread. 

I treat at Rush Univ. Medical Center in Chicago.  We went to Mayo Clinic this summer for a second opinion and they confirmed that everything we have done so far is pretty much standard procedure.  Is Rush a good option?  We live in Northwest Indiana.

We are trying to decide whether to do a Phase 1 study of SEA-CD40 with/without Pembrolizumab (keytruda) or try different chemo drugs (abraxane and Avastin).

Does anyone have any insight?  I am OVERWHELMED.  Thank you.

LORI

 


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kabc's picture
Replies 11
Last reply 1/5/2018 - 12:11pm

I was turned down for Ipi/Nivo trial here in Ontario because the margins from my head/neck WLE were positve. Onc wants me to start radiation and then Tafinlar/Mekinist.

I am looking for any advice and experience that anyone with head/neck has had with this combination.

My head has not even healed yet and all this is happening fast.

Thanks to anyone who may answer.  I am feeling a quite a loss not getting into trial.

 

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bchestney's picture
Replies 3
Last reply 1/5/2018 - 12:01pm

Just finished 4th course (8th infusion) and side effects are significantly reducing my quality of life.  They include severe dry mouth, muscle pain, muscle weakness, joint pain, general malaise, chills.  Now my most recent labs show elevated liver enzymes, all of which I will discuss with my onc next week.  Since I am NED, and the Nivo is adjuvant therapy, it is tempting to discontinue the infusions.  If I were 100% certain that these side effects would disappear after the 16 more infusions, I could suffer through it.

But what worries me is that they are hoping the one year of infusions will "teach" my immune system to attack cancer cells.  Might it also teach it to continue to attack the healthy cells (causing my side effects)?

Please share your experience if you had side effects during Nivo infusions, and the infusions have now been discontinued (either after the full course of treatment, or after early termination due to toxicity).  Did all side effects disappear, or did some persist?  If so, for how long so far?

thanks to all, and hoping 2018 is a great year for all of you!

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