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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Nicky's picture
Replies 5
Last reply 12/28/2013 - 8:33am

Hi everyone.

Merry Christmas and Happy Holidays.  Well it's now coming up to the end of my 13th year surviving this disease.  After 3 primary melanomas of various depths and types over the 13 years, one spreading to my lymph nodes, 2 radiation treatments and lymphoedema in my right leg, it is so good to be persistently kicking this disease.  I have been clear for quite a few years now.  For all those out there who are battling and going through a difficult time at the moment, please never give up hope.  Try and reduce your stress over the holiday season and enjoy each day you have. Once again and I say this each year, but MPIP got me through some of those dark days and I will never forget that, thank you everyone for making this board a beacon of hope. You can read my patnet under Nicky

 

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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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Anonymous's picture
Anonymous
Replies 6
Last reply 12/28/2013 - 2:35am

I'm anxiously waiting for call back from my onc doc about a node that lit up on scan earlier this week...she didn't know a whole lot when she phoned last night at 10 pm...no final report as yet, but at least one node had lit up; she said it's likely in drainage area from lung mass removed by VATS early Sept....

is the standard in these cases (well, I really don't know the case as yet I guess!) resection if at all possible, followed by radiation? I'm not sure a lit up node qualifies me for the ipi/nivo trial...but would definately like this thing (hopefully it's only one) removed...I so so so appreciate everyone's input and support...thanks very much

 

SB

Sally

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ironberg's picture
Replies 5
Last reply 12/28/2013 - 12:41am

I am supposed to make an appointment with a dermatologist ...

 

what can I expect?

 

I wasnt told anything except that my Melanoma biopsy wasnt good....

 

 

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hdelancey23's picture
Replies 14
Last reply 12/27/2013 - 11:24pm

My mom went into the ER this morning due to extreme pain. They gave her a shot of diladid for pain and it helped. Her doctor ordered an x ray to see what is causing pain in her back. He said it is probably tumor related. We will know more tomorrow when the doctor Looks at the x ray. She talked to another doctor today which said that they can't do gamma knife or SRS on her brain because there is just too Many lesions in her brain. Her only option now is to o whole brain radiation. Her doctor said that she will probably only have a couple weeks left. I just don't believe that. last December he said three to six months and that was a year ago. I am concerned about what the whole brain radiation will do because she already has swelling of the brain and that is a side effect of the radiation. I just don't know how much more swelling she can take. She does not want to go on hospice because she can not do anymore treatments. She wants to do this on her terms and keep fighting until the very end. This has been and continues to be a very rough road for her. It is an awful thing when you get used to hearing bad news. If anybody has advice or bits of what yo expect it would be great.

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Jahendry12's picture
Replies 6
Last reply 12/27/2013 - 11:13pm

I have been reading entries on this bulletin board all day today.  It's nice to know I am not alone in this fight. My husband was diagnosed with nodular melanoma in April 2011. After 2 surgeries and a SNB, they also found he had a rare lymphoma. My husband is a healthy, active man that has been, & remains asymptotic. Since he was diagnosed, he has had  5 surgeries, no treatments. He had a lung nodule removed in march of this year & we have CT's every 3 months - so far so good.

As you all know, this a nightmare roller coaster ride that you just want to wake up from.  I don't talk about it a lot because I find that it's hard for people to understand what we are going through.  I appreciate everyone's openness & honesty on this site. I finally found people that live what I live, feel what I feel, & have the same questions, concerns & worries that I am experiencing.   God bless & I pray for you all

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casagrayson's picture
Replies 3
Last reply 12/27/2013 - 10:57pm

Strength and Courage,

Susan

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Julie in SoCal's picture
Replies 2
Last reply 12/27/2013 - 5:41pm
Replies by: Michelem, POW

Dear friends,

I"m now back in Southern California after a bit of a whirlwind ride from Bangkok.  

Yesterday I had scans and saw my Rock Star Mel Dr.  Scans came back all fine.  No indication of mel anywhere!  Needless to say i'm over the moon with these results. I didn't quite have myself buried and gone, but I did have a very real discussion with myself and family about the possibilities, including that this would be a "career ending injury" as my brother called it.  So coming out of this only in-transit mets is fabulous!

Because I left one in place (thank you all for encouraging me to do this!!!) I technically have active measurable disease and am therfore, technically eligable for ippi!  So sometime after the New Year, I'll start.  Amazing.  

Thank you so much for your advice and encouragement!

Merry Christmas and Blessings to you in this New Year!

Julie

 

 

 

 

 

 

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/27/2013 - 11:50am
Replies by: NYKaren, POW
Salvage Radiosurgery for Brain Metastases: Prognostic Factors to Consider in Patient Selection
Int. J. Radiat. Oncol. Biol. Phys 2014 Jan 01;88(1)137-142, G Kurtz, G Zadeh, G Gingras-Hill, B-A Millar, NJ Laperriere, M Bernstein, H Jiang, C Ménard, C Chung
Research · December 19, 2013
 
 

TAKE-HOME MESSAGE

  • "Among patients who have received stereotactic radiotherapy for recurrent brain metastases after prior brain radiation therapy, factors predicting for improved overall survival were younger age, extracranial disease control, and interval time from initial radiotherapy to salvage of at least 265 days."

- Chris Tully, MD

  • This study highlights the possibility of durable responses in patients with recurrent brain metastases treated with salvage SRS.

ABSTRACT

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.

International Journal of Radiation Oncology, Biology, Physics
Salvage Radiosurgery for Brain Metastases: Prognostic Factors to Consider in Patient Selection
Int. J. Radiat. Oncol. Biol. Phys 2014 Jan 01;88(1)137-142, G Kurtz, G Zadeh, G Gingras-Hill, B-A Millar, NJ Laperriere, M Bernstein, H Jiang, C Ménard, C Chung

 

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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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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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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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kpcollins31's picture
Replies 6
Last reply 12/26/2013 - 6:19pm

Just found out the results of my scans earlier in the week. Brain MRI was clear which was great. However, CT of Abdomen came back with the following: "1. Thickening of the small bowel wall in the left lower quadrant with suspected small bowel mass, raising the concern for metastatic disease. PET/CT is suggested for further evaluation. 2. Subcentimeter hypodensities in the liver are too small to accurately characterize."

I have not talked to my oncologist since the scans and actually found these results posted online. My appointment with him is not until the end of January... guessing that might get moved up. I know the above does not confirm stage 4 but it seems pretty likely. At least there are some promising treatments out there now.

Kevin

 

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mark1101's picture
Replies 4
Last reply 12/26/2013 - 3:21pm
Replies by: mark1101, awillett1991, POW

Got the results of my last PET scan.  They noted a small (less the 1 cm) shadow on my right posterior iliac and ordered a biopsy.  The biopsy confirmed a melona met on the bone.  My onc is suggesting we postpone treatment of this for a mont or so, take anothe scan see what changes occur.  If it is smaller or gone, do nothing.  Apparently Ipi is noted for having a delayed reaction effect on  mets sometimes.  If it is the same, go in surgically and kill it with a hot or cold needle at the surgeon's recommendation.  If it has enlarged or spread to other sites, then we are considering IL-2 HD.  I am considered of good general health and good likely tolerate this treatment with high probability of backing the melanoma off.

Anyone else experienced a similar set of choices...how did it go for you.  Also anyone familiar wtih IL-2 HD and its benefits relative to the side effects.  How did you have it administered?

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WendyD.'s picture
Replies 8
Last reply 12/26/2013 - 11:55am
Replies by: WendyD., Janner, POW

I had 3 more biopsies done this past Monday and I got my results today. One was just a regurlar mole, one look like just a wart, and another had abnormal cells. I asked if abnormal meant melanoma and she said that it didn't say melanoma, basal, or squamous, just said abnormal cells. So she said that the doctor was gonna keep an eye on it and in four weeks he was gonna freeze the rest out. Then as I was on the phone she scheduled me to come in for my wide local excision on Dec.26, which is 3 weeks since I got diagnosed with the melanoma. I'm suppose to pick up my path reports today for the recent biopsies. Ok with that said I have a couple of questions I'm hoping someone can answer for me. 1. What does abnormal cells mean and is that a threat for melanoma, or would the path report specifically say melanoma if that was what they suspected? 2. Are they waiting too long to do my WLE or did anyone else have to wait 3 weeks or longer to get it done? Thanks in advance to whoever answers my questions. :)

In God I Trustsmiley!

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