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.

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I have had 5 combo doses and 27 nivo maintanance doses and would like to know how you feel if you have had around the same number. I have severe fatigue, salavi gland issues that come and go after each dose, joint soreness, still have the rash but no itching or burning, still on thyriod meds and have to take prescription potassium supplements and vitiligo that continues to slowly spread. My last 2 scans have been NED and my dr wants to continue treatment for 9 more months.which will make treatment total 2 years and 3 months.

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I only ask because, everywhere I look, it says that the biopsy has little to do with overall longevity. So, has anyone just commenced with the wide excision, and then the follow-up care (i.e., lymph node palpation, skin checks, etc every 3 months). Just wondering. Thanks!


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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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JRM's picture
Replies 2
Last reply 1/3/2018 - 11:07pm
Replies by: JRM, Janner

Hello everyone, I am new to the MRF Forum, but thought it beneficial to be more proactive regarding my past melanoma, even though I have been clear for five years. I was first diagnosed with melanoma stage 1 in 2013 and had a wide excision of the lesion on my upper left arm. My margina came back clear the first time around. Over the last several years and with many other moles removed, I have been seeing my original diagnosing dermatiologist twice a year for mole checks.

Today, I had two suspcious moles removed near the original melanoma scar. My dermatologist thought they were atypical nevi and did not seem too worried,  but they both had black spots within the moles. My question to everyone: how common is it to have a recurrence of early stage melanoma near an original site? If my biopsies come back positive this time around, I would imagine I would have a wide excision surgey again. Would a PET scan be advisable now?  Has anyone had experience with this? Many thanks and best wishes for good health and happiness in 2018! 

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PTgal's picture
Replies 2
Last reply 1/4/2018 - 3:51pm
Replies by: JRM, Janner

Here I am with more questions. My doctor (family practice/GP) performed the excisional biospy of the mole which was later confirmed as T1b malignant melanoma. He has referred me to a general surgeon for the WLE. I meet with the general surgeon on Monday and will be asking about SNB as well.

As far as follow-up afterwards, should I just see a regular dermatologist or some other type of specialist? My GP said I can have skin checks at his office, but I would feel better about going to a dermatologist at the very least. Anyone know the best place to go in Little Rock,AR?

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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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BillB's picture
Replies 6
Last reply 1/5/2018 - 6:38am
Replies by: Newmanbell, BillB, SABKLYN

Happy New Year to everyone, Completed the eighth Keytruda infusion a little while ago. Driving back to Syracuse tomorrow. NYC is getting a little taste of Upstate NY snowfall today. So far the side effects since infusion #6 have been non existent except for some mild fatigue. Will be getting CT scans in three weeks.

good luck to everyone, Bill

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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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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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Anonymous's picture
Replies 2
Last reply 1/5/2018 - 11:30am
Replies by: Janner, Jvlie

Hi . which is the superficial spreading melanoma ?

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casagrayson's picture
Replies 2
Last reply 1/8/2018 - 9:18pm
Replies by: casagrayson, Bobman

Has anyone heard from Bobman?  Last he posted he was trying to get back to the mainland for treatment.

Strength and Courage,


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Anonymous's picture
Replies 3
Last reply 1/10/2018 - 5:37pm
Replies by: Joannxbuc, Becky, Cindyco

My wife, 42 years old, was diagnosed with mucosal melanoma in the nasal passage 4/2017. We caught it early, she had two surgeries(2nd was to clear margins). Then, to be agressive, as preventive, she had 30 rounds/6weeks IMRT(radiation) then 4(21 day) rounds of chemo(cisplatin & temador). Surgery and radiation was at MD Anderson, chemo was prescribed by MDA, but administered in SC.

Most statics show a 5 year survival at 20-30%,  How long have you been fighting with MM?


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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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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!



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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.

Hope,this helps!  

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