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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WendyD.'s picture
Replies 9
Last reply 12/30/2013 - 2:35pm

I have spoke with Janner about it taking so long for me to receive my WLE since my melanoma diagnosis. First I would like to say that orginally I didn't have my specialists to follow up with after my GP sent my charts over to him. I ended up having to go to another doctor completely which was shocked that no one had followed up considering my diagnosis. Well, the new doc said he would do my WLE himself since he does these kind of things all the time. Plus my melanoma was thin and in an area that I wouldn't have to see a plastic surgeon. Out of curiousity I'm just wanting to know how long each person here had to wait before they performed the WLE on them after their diagnosis? Thanks to all. :)

In God I Trustsmiley!

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trigirl67's picture
Replies 9
Last reply 1/29/2014 - 7:08pm

I have a Melanoma tumor in my lower right lobe of my lung...scheduled for surgery Dec 26 and am scared!  Anyone can tell me what to expect?

Trinity m Ballare

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natasha's picture
Replies 5
Last reply 12/31/2013 - 6:07am
Replies by: natasha, Anonymous, JC, WendyD.

   Dear friends ! I wish you a Merry Christmas ,  good health and happiness !

  All the best for all of you and your families !

 I hope new year will bring only good news only  for everyone!

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/25/2013 - 6:23pm
Replies by: BrianP, NYKaren

Any idea when this may become a reality? 2014?!?

Thank you all and have a beautiful Christmas...

Sally

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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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mitchwendy's picture
Replies 2
Last reply 12/23/2013 - 3:54pm
Replies by: mitchwendy, sbrooks90

I had my SNN on my left groin last Monday. However, yesterday and today the area to the outer side of my thigh really feels bruised. Almost from the left side of where the incision was but not exactly touching the incision, all the way to the outside of my thigh, does this make sense? Has anyone had a bruising sensation a week after a SNB?

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

Strength and Courage,

Susan

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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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Tmh7's picture
Replies 6
Last reply 3/4/2014 - 7:25pm
Replies by: Tmh7, Anonymous, DonW, Janner

Hello,

I have been lurking on this site since my initial diagnosis about 18 months ago.  I had been doing much better mentally and emotionally but now after some non specific dull aching on my right side, I have to go for abdominal CT and I feel like I'm back to the beginning. 

I had an ultrasound done that showed 4 small areas on my liver that could be hemangioma or tumors. The largest one was 12mm across. The rest of the ultrasound was normal, no swollen nodes in my abdomen. My blood work is normal. 

My inital melanoma was on my right thigh. 0.95mm, non ulcerated, miotic rate 2. My SN biopsy was negative as well as a FNA. 

Had anyone ever gone through this? I am trying to be positive but am very scared!

TIA

 

 

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JC's picture
Replies 0

I do think others have been through this.  As Janner says, if you scan you often will find many "benign beasties" in our bodies; liver hemangiomas, lung granulomas, etc...  once they go down that road and find anything they have to follow up, but it doesn't always mean malignancy.

 

Sorry I cannot respond to your post, I keep getting a "you're spam, you're blocked" message when I try to post for some reason.

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Stage III/IV Melanoma Patients at Risk for New Primary

 

J. Clin. Oncol 2013 Dec 02;[EPub Ahead of Print], L Zimmer, LE Haydu, AM Menzies, RA Scolyer, RF Kefford, JF Thompson, D Schadendorf, GV Long

Research · December 24, 2013
 
 
 

TAKE-HOME MESSAGE

  • This long-term follow-up of > 4000 patients reported a 5.6% rate of second primary melanoma at 10 years in patients with stage III disease at initial diagnosis.
  • Risk of developing a second primary was higher in males and in those with history of multiple melanomas in the past.

- Richard Bambury, MD

 

ABSTRACT

 

PURPOSE

New primary melanomas (NPMs) have developed in some patients with metastatic melanoma treated with BRAF inhibitors. We sought to determine the background incidence of spontaneous NPMs after a diagnosis of American Joint Committee on Cancer/International Union Against Cancer stage III or IV melanoma in patients not treated with a BRAF inhibitor.

 

PATIENTS AND METHODS

Patients diagnosed with stage III or IV melanoma at Melanoma Institute Australia between 1983 and 2008 were analyzed, and those who received a BRAF inhibitor were excluded.

 

RESULTS

Two hundred twenty-nine (5%) of 4,215 patients with stage III melanoma and 43 (1%) of 3,563 patients with stage IV melanoma had at least one NPM after diagnosis of stage III or IV disease. The 6-month, 1-year, and 10-year cumulative incidence rates of developing an NPM after stage III melanoma were 1.2% (95% CI, 0.86% to 1.51%), 1.8% (95% CI, 1.44% to 2.26%), and 5.9% (95% CI, 5.08% to 6.74%), respectively. The 3-month, 6-month, and 1-year cumulative incidence rates of NPM after diagnosis of stage IV melanoma were 0.2% (95% CI, 0.07% to 0.36%), 0.3% (95% CI, 0.15% to 0.51%), and 0.4% (95% CI, 0.25% to 0.7%), respectively. In both patients with stage III and stage IV melanoma, male patients and patients with a prior history of multiple primaries had a higher incidence of NPM.

 

CONCLUSION

Patients with stage III and stage IV melanoma remain at risk for development of further primary melanomas, particularly if they have a history of multiple primary melanomas before stage III or IV disease. The incidence rates are lower than those reported in patients receiving BRAF inhibitors. However, the results must be compared with caution because dermatologic assessment is more frequent in BRAF inhibitor trials.

 

Journal of Clinical Oncology
Incidence of New Primary Melanomas After Diagnosis of Stage III and IV Melanoma
J. Clin. Oncol 2013 Dec 02;[EPub Ahead of Print], L Zimmer, LE Haydu, AM Menzies, RA Scolyer, RF Kefford, JF Thompson, D Schadendorf, GV Long

 

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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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Anonymous's picture
Anonymous
Replies 4
Last reply 1/2/2014 - 5:11pm
Replies by: JerryfromFauq, Anonymous, casagrayson

The counts went crazy, so that feature was apparently removed.  Now we are speaking to a blank wall. 

Couldn't we have this feature fixed?  It gives a sense of community to know people are out there.  Otherwise, there are only a few replies, or none at all and you wonder: Is anyone there?  Without these counts, who knows?

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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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Michelem's picture
Replies 11
Last reply 1/2/2014 - 3:58pm
Replies by: JerryfromFauq, kylez, Michelem, arthurjedi007, SABKLYN, Anonymous

My husband had surgery in October -removal of melanoma on the bottom of his foot, and 8 lymph nodes in the groin area. Subsequently another melanoma appeared near the first, and was removed in an in-office procedure.

As he healed, we began screening for the interferon-ipi randomized trial. But that PET scan, just 90 days after the first, showed cancer has now spread to more lymph nodes. This kicks us from the trial - so disappointing. In two weeks he will have surgery to remove more lymph nodes. We are told a two-hour procedure and at least one night hospital stay. So it seems like a serious procedure. 

What next? Does anyone know what this quick recurrence means in terms of possible further spread? I assume we may get back in line for the randomized trial once he is healed from this surgery. Based on previously experience, that is likely to be at least a couple of months - which seems like a long time to wait. 

Thanks so much for insights, thoughts . . . . and prayers!  mm

MicheleM

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