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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Codnibbler's picture
Replies 1
Last reply 12/14/2013 - 12:22pm
Replies by: Janner

Hey guys, I have a mole in my armpit that is concerning me. It is starting to itch and the skin around it is getting flaky. I showed it to my Primary Dr and he wants to biopsy it. I have had 10 displastic moles removed in the past 10 years since my chemo & radiation for Hodgkins Lymphoma. I have an apointment for the biopsy, in 2 months. Any advice?

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Mat's picture
Replies 3
Last reply 12/16/2013 - 9:33pm
Replies by: Mat, Moodypoodle, Dick_K

I have a good friend that was just diagnosed with pancreatic cancer.  Does anyone know of a resource that is comparable to this site for pancreatic cancer patients?

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mikvahnrose's picture
Replies 8
Last reply 12/28/2013 - 2:43am

I have had a funny looking mole on my back for (as long as i can remember 3 years) but it is possibly longer. My boyfriend said it never eally changed but always worried me. I got it removed two weeks ago and the derm did say it looked odd but he wasnt too concerned about it. He told me that when looking under the dermascope it didnt have an blue or white halos, color regression, rapid cell movement.. all that was was spotting?? I think thats what he said. Anyways he sent it to the lab (called Mohs-tek biospy prep lab) and about a week and half later got a call from the nurse to tell me everything was fine. It was benign. I was overjoyed to hear the news. I cried to her saying thank you, you don't know how much stress ive been; waiting for the results. That was 3 days ago.

Now i am thinking, they told me it was benign. But what if they misdiagnoThis was the mole.sed it. How common of an occurence is a melanoma misdiagnosed? 

Questions have been running through my head: Should i trust the pathologist? It that company a reputable company? 

I sound crazy but i want an accurate answer, i don't wnat this thought to linger in my mind of "what ifs"

Does this sound justified to get it re-examined or am i just being paranoid. Does it cost anything to ask your derm if they can do a second pathology report on my mole, i don't have insurance so price is a concern. But i am willing to pay the cost if i get an accurate answer. 

Has this happen to anyone? What should i expect or do.

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Muru's picture
Replies 2
Last reply 12/26/2013 - 11:48pm

Dear All,

I am living out of India.
 
I am a melanoma Stage III patient with Unrectable tumor in my Neck. I have multiple Tumors in the Neck and LaryngoPharynx area.
 
Please find attached the summary of the treatment.
 
Summary of the treatment
I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed in the first surgery . I was under constant observation. I was cancer free for 5.5 years. in Jan 2013 melanoma has recurred again in my larynx area. . Now my entire Voice Box has been removed on Feb 6th 2013 during the second surgery. ImmunoHistoChemistry for C-KIT came as positive and tried C-KIT inhibitor Imatinib oral tablet for a month.
But still Melanoma has come back to me again in Right Side Level II and Level IV Lymphnodes within 3 months of my 2nd Surgery. I had undergone 3rd Surgery for the radical Neck Dissection of Lymphnodes in May 2013.I was under Interferon Injection for 3 months, Melanoma has recurred again in Laryngopharynx and Neck nodes. Surgeons have told that surgery is no more possible for my case. As per PET CT it has not spread to any other internal part of the body.  My braf mutation is negative. 
 
Imported Yervoy and took the first dose of yervoy on Dec 5th. I did not have any side effects so far...
 
Also I did not see any see any response so far for the  last 10 days. Still the tumor growth is in increasing trend..
 
Is it too early to see the response from yervoy. How long we can wait for Yervoy to respond. Please let me know your opinion on this.
 
If Yervoy does not work, do we have any other option? Is high dose IL -2 an option? 
 

Please share your views.

Thanks,

Muru

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/16/2013 - 10:48am
Replies by: POW, Anonymous, arthurjedi007

Does anyone have any experience with this trio?  The doctor is adding Ipi on Monday as the combo is not working.  

Thanks.

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arthurjedi007's picture
Replies 4
Last reply 12/26/2013 - 11:21pm

I'm confused. I"m stage 4 with mel in my bones but they do not want to remove a spot that just appeared on my skin (shoulder blade). This is the first spot the drs have seen on my skin. They say it is not their policy to remove melanoma skin cancer when a patient is being treated for melanoma. Currenty I'm taking ipiluminab(Yervoy). This is a dermatologist that has treated over 1000 melanoma patients and removed some of my non mel spots.

Has anyone come across that and can you explain why?

I'm imagining this skin spot the size of a quarter is like a melanoma factory generating a gazillion cancer cells to mess me up. Basically a couple months before I got the stage 4 I had a similar looking spot on my back that went away in a few weeks and I don't know if it was mel. Now I'm even more worried this spot is going to cause my mel to increase enormously if they don't get rid of it. Thoughts?

 

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Paige712's picture
Replies 3
Last reply 12/17/2013 - 12:03am
Replies by: UrsulaZ, POW, Linny

Hi my name is Paige and just recently i've noticed a strange medium brownish coloured mark under my right big toenail. it's in the nail's right bottom corner and is around 5-6mm vertical and 3 mm horizontal so fairly rectangular.

Now I'm just hoping it's a bruise but do you think it could be something worth investigating?

Thank you :)

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mikvahnrose's picture
Replies 3
Last reply 12/16/2013 - 4:57pm

There's this raised mole that has been on my back for a few years. Never grew in size (2mm) is oval shape but pigment is what bothers me. It's blotchy. Like most of it pink, a few speck of dark brown. 

http://s25.postimg.org/xm57wroi7/image.jpg

This past week a spot got darker.

http://s25.postimg.org/4aazl1vwv/image.jpg

I was concerned about it, and one night I was touching the mole and it felt a tad rough. I don't know WHY I decided to do what I did, but for some reason I squeezed it a little bit and then the black spot began to come out? As you see in image, is slightly irritated but that dark spot is like almost out.

http://s25.postimg.org/oiyd6rv7z/image.jpg

Then I brushed my fingers over the spot and it just fell off?? Like, the pigment was under my skin and now it just fell off? Can that even happen??

http://s25.postimg.org/nupintwi7/image.jpg

Sorta distraught as to what or why this happened. I'm gonna get it checked by my derm, last time I went he said it didn't look like anything. I'm just concerned as this past week all this change happened.

 

 

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lucy3's picture
Replies 9
Last reply 1/3/2014 - 11:12pm
Replies by: kylez, Anonymous, BrianP, JerryfromFauq, lucy3, sbrooks90, POW

hello friends.   this is my first post, though i have been lurking for the past 3 months or so.  july 12,2012 i had a melanoma, 3.05   without an irritated site.  removed along with an alledged negative snb.  one small area of which had an area that the pathologist would not declare negative, nor would he declare it positive.     i thought i was in good shape.  had a good year.   august 2013, noted groin  node in lymph area of past surgical site.  (left ankle)   had node removed and clean out of lymph nodes.   wore drain 4 weeks, then had 23 days or radiation to site.   was waiting for randomization to trial   of 2 arms  ipi and l arm interferon.      just learned that i was placed in the interferon group.        i am a robust 75 who looks 65 and is healty other than a little arthritis and hypertension.and don't want to waste one of my possible last years being miserable          i did learn through probling my onc, (very nice, but not mel specialist) that i am braf negative, and NRAS positive.  (i know this is not good news)   i have just completed negative pet and ct scan or head. ( i cannot have mri or head due to implant in ear)    i am asking for advice re next step.   i would like to see a mel specialist at a large cancer center.   vanderbilt is much more convenient, sloan kettering could be managed.   and what is "watch and wait" really like.   is that good enough for me.    any bit of info provided would be appreciated and evaluated.   i have learned so much from this site and felt such kindess and knowledge frin every post.     thanks to you all.     

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Anonymous's picture
Replies 4
Last reply 12/23/2013 - 1:36pm
Replies by: Golda_, Bubbles, Ioana, jmmm
My mum was diagnosed with melanoma on scalp, stage 4 in October 2011. A simple mole she had for years became black and ulcerated. IT was immediately removed, but without safety margins:(. After a single month, the cancer came back, with new primary and a few black dots near. She had another surgery in 2 months, carried out by another doctor, who was amazed to find that in this world in 2013, melanoma was removed initially without safety margins. She had it removed and a skin graft from her leg was put on her scalp. She received Interferon, for one year. Simultaneously she's been through chemo, DACARBAZINE only, because she is also diabetic. This year, almost one year after diagnosis she started to feel pain in her chest. She thought is just smth that will go away. A PET Scan carried out one month prior to her new chest pain revealed NOTHING. So she went to another clinic to find out she had lots of metastasis in her chest area :(.
She continued chemo, but with no results at all. For 3 months she mainly laid on bed, sometimes she cried being in pain.
I asked her to do the BRAF test, and she is positive.
Now I bought her Vemurafenib, which is soooo expensive. In only 4 days of treatment the lymph node near her ear decresead. She started to walk again, she started to cook, she takes short walks, she says the pain reduced (in only 10 days). SOmetimes I think: can that be possible? 
 
DOES ANYONE KNOW IF THERE IS A PLACE ON THIS EARTH WHERE I CAN GET THIS VEMURAFENIB(ZELBORAF) REDUCED OR FOR FREE?
ROCHE OFFFERS A DISCOUNT, BUT EVEN SO, IS STILL TO EXPENSIVE FOR ME :(

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JanineV's picture
Replies 7
Last reply 12/20/2013 - 12:31am
Replies by: JanineV, delora, Anonymous, Janner, Mat

I am 28 years old and about 6 months ago, I was diagnosed with Melanoma. I had had a large mole on my back which I found to be ugly and about a year ago, I went to the skin cancer clinic to have it checked out. The dr said it was fine. Nothing to worry about. But, she said, I could have it removed if I wanted to for cosmetic reasons. I made an appointment to do so but ended up cancelling and then I got busy, as one does, and just never went back. It was always nagging at the back of my mind, but I told myself I had had it checked and it was fine. Then I got my yearly checkup notice in the mail, a year later, and went back. This time, I was told to have the mole removed immediately and was told that it was a melanoma. 

 

It was 1.4mm thick, Breslow level 4, no ulceration and on the middle of my back. I have seen2 dermatologists and a plastic surgeon in the last few weeks. One told me he estimated it to be Stage 1, my plastic surgeon said it was Stage 2 so I'm not sure what stage I am exactly. I have had the melanoma removed and last week I had a wide skin excision and sentinel nodes removed from under both arms. I have not yet gotten the results back, but the drs said the nodes looked healthy when they took them out. I have also had a PET scan which came back clear. 

 

I am new to the whole melanoma thing and honestly I am probably still in shock. My question is, is there anyone else out there in a similar situation or who was in a similar situation before? I have asked the drs what are my chances of being completely cured or of it coming back and they are hesitant to give me clear answers. I know cancer is a tricky disease with no definitive answers but I really need some peace of mind. If anyone could share their story with me, I would really appreciate it. 

 

Other than staying out of the sun, which I do and have done for years, is there anything else I can do to prevent reoccurence? 

 

 

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WendyD.'s picture
Replies 5
Last reply 12/18/2013 - 1:34pm
Replies by: WendyD., POW, Janner

I was recently diagnosed with a melanoma on Dec. 6th of this year.It was .30mm and 0 mitosis and no ulceration, but I still haven't had my WLE yet and am now in the process of waiting for 3 more biopsy reports to come in on some other areas I had removed yesterday. The doctor I am seeing now said he will definitely do the WLE on me once he gets my path report from the old doctor. He doesn't understand why they didn't follow up with me. He also said he believed that one of the areas he biopsied is Basal Cell Skin Cancer, but the lesion is really small and he believed the biopsy itself got 90% of it out. So the WLE will be small. And yes with Basal Cell you have to have a WLE. :( So the waiting is terrible. I don't know how much more of this I can take. My nerves got the best of me today and I had a full blown anxiety attack. It was horrible. Can someone give me some coping ideas here? I have tried to stay positive and I've tried to be strong for my husband and 3 kids, but really I just want to stay in bed and cry. This has really hit me worst than I thought and I don't think I can handle being diagnosed with another Melanoma. The one area he removed really concerned me because it itched and irritated me really bad. I keep trying to tell myself that it was only because of where it was located that my seatbelt and clothing rubbed against and that's why, but I can't keep my mind from going down the road of yes this is another melanoma and it's going to be worst than the first. Okay sorry for the long thread. I'm just trying to vent a little. Anyone please feel free to comment. It really helps for me to hear from others going through the same thing. 

In God I Trustsmiley!

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Replies by: Mat, Anonymous
Regression Associated With Favorable Outcomes in Stage I/II Melanoma
Br J Dermatol 2013 Dec 01;169(6)1240-1245, S Ribero, S Osella-Abate, M Sanlorenzo, P Savoia, C Astrua, G Cavaliere, C Tomasini, R Senetta, G Macripò, MG Bernengo, P Quaglino
Research · December 18, 2013
 
 

TAKE-HOME MESSAGE

  • The role of sentinel lymph node biopsy (SLNB) in patients with melanomas with regression is controversial, as is the prognostic significance. In a retrospective analysis of 1693 patients with stage I/II melanoma, results showed favorable disease-free and overall survival associated with regression in the primary melanoma. Further, the rate of those who later developed regional node involvement with a previously negative SLNB ("false negative SLNB") was lower in those with regression.
  • Regression in melanoma appears to have a more favorable prognostic role than was previously thought, and the use of SLNB in patients with thin melanomas without additional risk factors does not appear necessary.
Commentary by

"These are fascinating data that fly in the face of the general sense that regression implies that the true Breslow depth would have been greater prior to regression, engendering an increased risk of metastases. There will likely be other datasets that can be evaluated or reevaluated to see if this holds true to help guide us in our care of melanoma patients. In the meantime, we will have to explain to patients that, when regression is present in thin melanomas, the data are not completely clear with respect to risks of metastasis and survival." – Eliot Mostow, MD

"It will be interesting to see how this finding holds up in other datasets and studies. If consistent, perhaps this may imply that regression signifies a good immunologic host response to the malignancy. However, this is speculative at this point." – Ashish Bhatia, MD

ABSTRACT
BACKGROUND

The prognostic significance of regression in primary melanoma has been debated over the past few years. Once it was considered to be a negative prognostic factor, as it may have prevented proper melanoma thickness measurement, therefore affecting the staging of the tumours. For this reason, it was considered to be an indication for sentinel lymph node biopsy (SLNB) in melanoma < 1 mm.

OBJECTIVES

To ascertain the utility of SLNB in thin melanoma and to clarify the role of regression in disease-free survival (DFS) and overall survival (OS) in our series.

METHODS

We analysed data collected from 1693 consecutive patients with AJCC (American Joint Committee on Cancer) stage I-II melanoma.

RESULTS

Globally, SLNB was performed in 656 out of 1693 patients. Regression was present in 349 patients and 223 of them were characterized by thin lesions. SLNB was performed in 104 cases of thin melanoma with regression. The majority of regional lymph node metastases were observed in patients who did not undergo SLNB (89 out of 132). Among the remaining 43 'false negative' patients only three showed regression in the primary. Using the Cox multivariate model, histological regression maintained a significant protective role [hazard ratio (HR) 0·62, P = 0·012 for DFS; HR 0·43, P = 0·008 for OS] when corrected for the principal histopathological and clinical features, despite SLNB.

CONCLUSIONS

We confirmed that regression alone should not be a reason to perform SLNB in thin melanoma and, on the contrary, it can be considered a favourable prognostic factor in patients with AJCC stage I-II melanoma.

I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 3
Last reply 12/26/2013 - 10:50pm
Replies by: JerryfromFauq, POW, SBeattie

Salvage Radiosurgery for Brain Metastases: Prognostic Factors to Consider in Patient Selection
Purpose

Stereotactic radiosurgery (SRS) is offered to patients for recurrent brain metastases after prior brain radiation therapy (RT), but few studies have evaluated the efficacy of salvage SRS or factors to consider in selecting patients for this treatment. This study reports overall survival (OS), intracranial progression-free survival (PFS), and local control (LC) after salvage SRS, and factors associated with outcomes.

Methods and Materials

This is a retrospective review of patients treated from 2009 to 2011 with salvage SRS after prior brain RT for brain metastases. Survival from salvage SRS and from initial brain metastases diagnosis (IBMD) was calculated. Univariate and multivariable (MVA) analyses included age, performance status, recursive partitioning analysis (RPA) class, extracranial disease control, and time from initial RT to salvage SRS.

Results

There were 106 patients included in the analysis with a median age of 56.9 years (range 32.5-82 years). A median of 2 metastases were treated per patient (range, 1-12) with a median dose of 21 Gy (range, 12-24) prescribed to the 50% isodose. With a median follow-up of 10.5 months (range, 0.1-68.2), LC was 82.8%, 60.1%, and 46.8% at 6 months, 1 year, and 3 years, respectively. Median PFS was 6.2 months (95% confidence interval [CI] = 4.9-7.6). Median OS was 11.7 months (95% CI = 8.1-13) from salvage SRS, and 22.1 months from IBMD (95% CI = 18.4-26.8). On MVA, age (P=.01; hazard ratio [HR] = 1.04; 95% CI = 1.01-1.07), extracranial disease control (P=.004; HR = 0.46; 95% CI = 0.27-0.78), and interval from initial RT to salvage SRS of at least 265 days (P=.001; HR = 2.46; 95% CI = 1.47-4.09) were predictive of OS.

Conclusions

This study demonstrates that patients can have durable local control and survival after salvage SRS for recurrent brain metastases. In particular, younger patients with controlled extracranial disease and a durable response to initial brain RT are likely to benefit from salvage SRS.

I'm me, not a statistic. Praying to not be one for years yet.

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