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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chuicat77's picture
Replies 3
Last reply 11/30/2013 - 10:41pm
Replies by: Janner, Anonymous

I was diagnosed with Melanoma on February 21, 2012, had wide excision surgery on March 6, 2012. My lesion was reddish pink, and discovered on my left breast during a breast exam. I have a genetic pre-disposition for cancer, as I have 3 1st degree relatives that have died of cancer. Due to the size and abnormality of it, I had major surgery and approximately 15% of my breast removed and reconstructed. My cancer was large across but not deep. It was classified as Melanoma in situ.

Many biopsies and surgical procedures to remove atypical moles in the past 18 months. Biopsy was perfomed on a "black mole" small in size, yet abnormal looking came back as "pre-cancerous" on November 25th of this year.....research has brought up many different definitions of this and my Dermo says that nothing more needs to be done. X-rays were also done on my chest and a granuloma was found on my right lung, blood work was abnormal as far as liver function and urinary. My gut is telling me something more is going on and that a more aggressive approach needs to be taken. I have contacted my surgeon and asked for his opinion, but I would like others who are going, or have gone through this, to help me. 

I have also had Basal Cell Carcinoma 3 times. I am thankful that I have an appointment with a geneticist on December 6 for an initial appointment. 

 

Thank you for your help!!!

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Kathysue McDonald's picture
Replies 2
Last reply 11/29/2013 - 9:52pm

Hi,  I had a 6cm punch biopsy Monday.  I've had Melanoma for 10 years.  I've progressed to stage 4.  I go to MD Anderson every six month. (Dr. Pappa )  I've been in remission for two years now.  I've done the il2 and the have the frozen t cells ready to go.  My question is: If you have a second primary in a different part of your body.  Do you start over with the wle and the snb and the 6 month interfuron plus subsiquent 6 months of self shots.  Does it kick you out of your current protocol ? I know you can't give me definite answers but I would like to hear from others who have had 2nd primarys and what they ended up doing.

All my best !

Kathysue

Kathysue

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cep3700's picture
Replies 8
Last reply 11/29/2013 - 7:35am

Hi Everyone,

I have posted a few times about my issues with getting all of my mothers paperwork in order from multiple dr's and trying to get it all to MD Anderson. My mother is getting worse by the day. She has multiple large brain tumors and just finished her WBR. We were supposed to start Zel treatment for her cancer in her abdomen, spleen, lungs, ovaries... Her stomach swells more and more each day.... She was supposed to have the Zelboraf by today, but we went to the office, and THE DR HASN'T EVEN ORDERED IT!!!! 

I cannot wait any longer, I have to get my mother into MD Anderson ASAP. 

Does anyone know anything about the MD Anderson Emergency Room? Is it only for current patients? We have our paper work sent into them, but still waiting for an appt with an oncologist... we have been waiting 3 weeks. Im scared that if I dont get her there soon it will not be good, and then I will blame myself. 

Should I just take her to the MDA ER? Anyones advice will help! I feel so helpless!

Thank you all,

Colleen 

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zbudimir's picture
Replies 7
Last reply 11/29/2013 - 1:20am
Replies by: zbudimir, POW, Anonymous

Hi Everyone,

My dad was on Zelboraf for over a year.  In October this year, he started feeling sick and was in and out of the emergency room for about 3 weeks.  During these 3 weeks he was not taking Zelboraf or anything else to treat his melanoma.  His doctor (who didn't even come to see him) prescribed him antibiotics and said that the spot they saw on his liver in the emergency room is just a cyst and not to worry because his last scans showed no tumors.  The 3rd time he went to the emergency room in those 3 weeks they saw that the cancer has spread to his liver and pretty much all over his abdomen. 

On 11/5, he started on the Mekinist/Tafinlar Combo.  He responded in the matter of 2 days and we had high hopes.  But, yesterday his blood results were poor and the doctor said that he has only few weeks left and that there are no other options available for him.  She also said that clinically (by touch), he liver has shrunk in size.

The blood results are as follows:

 

                                                            11/5                11/15              11/27

Lactate Dehydrogenase                656                 365                 719

Alanine Aminotransferase             56                   41                   65

Alkaline Phosphatase                    540                 515                 641

Aspartate Aminotransferase         75                   51                   86

 

Has anyone else had the same experience?  Do you have any suggestions or ideas on other options/treatments?  Please help

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Society for Melanoma Research

Melanoma Therapy Overview at SMR 2013
Georgina Long, BSc, PhD, MBBS, FRACP
At the 10th International Congress of the Society for Melanoma Research (SMR), we spoke with Dr. Georgina Long about current targeted approaches for the treatment of advanced-stage melanoma.

PD-L1 Inhibitor MK-3475 Again Shows Promise in Advanced Melanoma
Anna Azvolinsky, PhD
The PD-L1 inhibitor MK-3475 is continuing to show activity and long-term responses in patients with metastatic melanoma, according to results presented at the International Congress of the Society for Melanoma Research.

Anti-PD-L1 Antibody MPDL3280A Active in Metastatic Melanoma
Anna Azvolinsky, PhD
About one-third of patients with advanced cutaneous melanoma treated with MPDL3280A, an antibody against the programmed death 1 ligand (anti-PD-L1) showed a response in a phase I clinical trial.

Combination of BRAF and PI3K Inhibitors Explored in Melanoma
Cancer Network Editors
Preliminary data from a combination trial of vemurafenib plus PX-866, a nonreversible pan-PI3 kinase inhibitor were presented at the 10th International Congress of the Society for Melanoma Research (SMR) held in Philadelphia.

Targeted Therapy Combo Boosts Survival for Advanced Melanoma Patients
Cancer Network Editors
Metastatic melanoma patients treated with a dabrafenib/trametinib combination experienced a 3.6-month increase in overall survival compared with patients treated with dabrafenib alone. The results were not statistically significant, partly due to the crossover design of the trial.

 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/28/2013 - 6:41am
Replies by: Anonymous, Janner, POW

Hi-

 

Recently diagnosed Stage 4. It appears that I never had or they can't fina a primary. Intilayy had small lump thought to be cyst...well it's melanoma. Oncologist was slightly shocked when pet scan lit up for metastasis to lung. No lymph node involvement etc... Wants to go straight to systemic treatment. Questions...

 

Is prognosis worse becuse of perceived spread through blood? Doc says spread to brain is higher risk...that's it...that's why treatment wants to start ASAP.

 

Best treatments now? Yervoy? IL-2? Trials? I'm told my disease burden is low.

This melanoma is turning out to be tricky.

Let's work for better treatments....for a cure!!!!

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Jasper's picture
Replies 1
Last reply 11/27/2013 - 10:53pm
Replies by: Janner

Can a 1mm melanoma have already metastasized to the lungs? I was just diagnosed yesterday, I don't know my stage, I don't know anything yet...I'm so worried!

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Brendan's picture
Replies 6
Last reply 11/27/2013 - 4:22am
Replies by: Mat, Brendan, Anonymous, POW, awillett1991

Hi Everyone,

[I posted this on MIF as well]

 
I have not posted in a while but I continue to read daily.  After Craniotomy #2 in June I enjoyed NED status for about 4-5 months.  I recently had a brain MRI and a chest, abdomen, pelvis CT.  The brain MRI looks good (no signs of anything new and surgical cavity continues to improve).  Unfortunately, two new mets were found in my lungs (2mm in left lung and 16mm in right lung).  
 
The appointment was Friday at 5pm so I will have to wait out the weekend before anything happens (phone calls, planning, etc.).  I am UPenn in Philadelphia and my doctor is a melanoma specialist.  It might be difficult for me to get into a PD1 trial because I have been on some type of steroid since Feb 2012 (now on prednisone 5mg).
 
Here is my melanoma history:
2008
Sept-Stage I-left ear-SNLB negative
 
2011
Sept-Stage IV-left lung (23mm met)-NED after lung surgery-then ipi.  
 
2012
January-ipi leads to hypopituitarism (still NED)
June-brain met discovered
July-Cyberknife for brain met #1
Sept/Oct-second round of ipi 
November-Crani #1
 
2013
April-brain met recurrence
May-GammaKnife for brain met recurrence 
June-Crani #2-Gliadel wafers left in surgical cavity
November-2mm met (left lung) and 16mm met (right lung); normal LDH (138)
 
My only mutation is P53
 
So ... Here were the options we briefly discussed:
 
Goal #1 is to find find a PD1 trial.
Other possibilities:
-surgery on right lung
-radiation/ipi combo (but doc is not sure about round 3 of ipi)
-TIL at NCI
-IL2 
-Ipi + IDO (new immuno) Phase 1 trial (I just heard of this one)
 
Going into this appointment, I was ready crani #3 (going for JAG's record) so this was quite a curveball.  Thanks for reading.  Any suggestions would be appreciated.  
 
Happy Thanksgiving!
 
Brendan

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Julie in SoCal's picture
Replies 4
Last reply 11/27/2013 - 2:16am
Replies by: Julie in SoCal, Janner, Anonymous, POW

G'day friends!

Here's the situation: I have 3 possible intransit mets near my SNB scar.  I will be seeing a Dermotologist/dermopathologist next week in Bangkok (I'm ab American, but I live in Northeastern Thailand).  My plan right now is to have the Dr biopsy (punch or WLE ) the lumps.  I would really like to know what these things are sooner, rather than later.

My questions are: Are there any reasons I should'nt I have the chunks tested here in Thailand (at the top hospital)? I know that labs can goof, lose samples and what nots. And I figure this can happen anywhere.    If I have it tested here, is it possible to have another dermopathologist test the same chunk? or will it be destroyed in the process? 

I'm asking this, because I'd rather be seen by my Mel Expert Dr. but I'm in Thailand and he is not.  Sigh.  I'm going to the US in late Jan (coincidently for my 5 year scans) and don't have the means to go now.  But at the same time, I want to do what is best. If the biopsy comes back Mel, I'll figure out how to get back home, but I don't want to go to the US early if it's not. Does this make sense?

Thank you again, Friends!

Blessings,

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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angelsd123's picture
Replies 1
Last reply 11/26/2013 - 10:03pm
Replies by: BrianP

Hello; I am new here. I have stage 4. currently at home after refusing general brain radiation over 2 years ago. They said i would live 3-4 months so i think they got it wrong. I have read about something Merk is doing with PD1 that might help me. Does anyone know best way to get into this trial series?

Thanks all!

Angel/

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paul Lyons's picture
Replies 4
Last reply 11/26/2013 - 6:56pm

 

Hello. This question is addressed to those who developed rashes and scalp itches from taking Zelboraf. After a week I developed a rash that covers much of my body, but my scalp in particular is causing crazy itching. My doctor put me on 40mg Prednisone. Are there are topical solutions that have worked for people, or suggestions about ways of relieving scalp itch -- so far I'm just scratching my head about it.

A good weekend to all,

Paul

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/26/2013 - 6:52pm
Replies by: paul Lyons, POW, Janner, Mat

Hello,

Last week I had an MRI arthrogram of my hip because of intermittent mechanical pain in my posteriolateral hip for abot 3 months (it was not getting worse with time, I would say even improved). An orthopaedic doctor I saw did X-ray (which was normal) and ordered MRI with contrast to rule out the labral tear. Well, MRI showed extensive labral tear but it also revealed a bone lesion 3.0 x 2.8 x 3.3 cm in acetabulum of my ischum bone with fluid fluid layers,"likely aneurysmal bone cyst", 
Because of my melanoma history (Stage 1, 9 years post diagnosis), I am besides myself with worry. I made an appointment with an orthopaedic oncologist at MGH who deals with benign and malignant tumors and I assume they will do a biopsy of this lesion. How bad is bone biopsy? Did anyone have an MRI suggestive of cyst that later turned out to be a metastasis???

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/25/2013 - 9:31pm
Replies by: Bubbles
Safety, Efficacy, and Biomarkers of Nivolumab With Vaccine in Ipilimumab-Refractory or -Naive Melanoma

 

J. Clin. Oncol 2013 Oct 21;[EPub Ahead of Print], JS Weber, RR Kudchadkar, B Yu, D Gallenstein, CE Horak, HD Inzunza, X Zhao, AJ Martinez, W Wang, G Gibney, J Kroeger, C Eysmans, AA Sarnaik, YA Chen

Research · November 21, 2013
 
 
 

TAKE-HOME MESSAGE

Nivolumab Active in Ipilimumab-Refractory Advanced Melanoma

  • "In this 90-patient phase I study, nivolumab had a response rate of 25%, with median duration of response still not reached at 8 months. Response rate was identical, regardless of prior ipilimumab treatment. PDL-1 staining was associated with but was not necessary for response." - Richard Bambury, MD
  • The findings demonstrate clinical activity of nivolumab in patients with ipilimumab-refractory or -naïve metastatic melanoma, whether or not they received a multipeptide vaccine.

 
 
ABSTRACT

PURPOSE

Nivolumab, a human immunoglobulin G4-blocking antibody against the T-cell programmed death-1 checkpoint protein, has activity against metastatic melanoma. Its safety, clinical efficacy, and correlative biomarkers were assessed with or without a peptide vaccine in ipilimumab-refractory and -naive melanoma.

PATIENTS AND METHODS

In this phase I study, 90 patients with unresectable stage III or IV melanoma who were ipilimumab naive and had experienced progression after at least one prior therapy (cohorts 1 to 3, 34 patients) or experienced progression after prior ipilimumab (cohorts 4 to 6, 56 patients) received nivolumab at 1, 3, or 10 mg/kg every 2 weeks for 24 weeks, then every 12 weeks for up to 2 years, with or without a multipeptide vaccine.

RESULTS

Nivolumab with vaccine was well tolerated and safe at all doses. The RECIST 1.1 response rate for both ipilimumab-refractory and -naive patients was 25%. Median duration of response was not reached at a median of 8.1 months of follow-up. High pretreatment NY-ESO-1 and MART-1-specific CD8(+) T cells were associated with progression of disease. At week 12, increased peripheral-blood T regulatory cells and decreased antigen-specific T cells were associated with progression. PD-L1 tumor staining was associated with responses to nivolumab, but negative staining did not rule out a response. Patients who experienced progression after nivolumab could respond to ipilimumab.

CONCLUSION

In patients with ipilimumab-refractory or -naive melanoma, nivolumab at 3 mg/kg with or without peptide vaccine was well tolerated and induced responses lasting up to 140 weeks. Responses to nivolumab in ipilimumab-refractory patients or to ipilimumab in nivolumab-refractory patients support combination or sequencing of nivolumab and ipilimumab.

Journal of Clinical Oncology
Safety, Efficacy, and Biomarkers of Nivolumab With Vaccine in Ipilimumab-Refractory or -Naive Melanoma
J. Clin. Oncol 2013 Oct 21;[EPub Ahead of Print], JS Weber, RR Kudchadkar, B Yu, D Gallenstein, CE Horak, HD Inzunza, X Zhao, AJ Martinez, W Wang, G Gibney, J Kroeger, C Eysmans, AA Sarnaik, YA Chen

 

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Alli's picture
Replies 3
Last reply 11/25/2013 - 6:09pm

Anybody still out there?? It's been a while.

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Julie in SoCal's picture
Replies 6
Last reply 11/25/2013 - 3:30am
Replies by: Julie in SoCal, vivian, MattF, Anonymous, SABKLYN, POW

Hi Friends!

It's been awhile since I've posted.  Normally I post in the new year, after I've had my yearly scan.  For the last 4 years I've posted that everything has come back normal and we all do the happy dance.  

Today however, I'm writing to ask your advice.  

Here's the situration:  I'm currently living in Thailand.  I'm 5 years post surgery for a melanoma on my left hand. I had a WLE and then SNB which found one axilia  lymph node with microscopic melanoma.  I went on to have the rest of the alillia lymph nodes removed. : Stage 3a. From there I had a month of High Dose Interferon, and then a year of GM-CSF (14 days on, 14 days off).

Up until now, I've not had any bumps or lumps or funky things near any of my WLE or SNB scars, although I've had many "funky things" removed.  But they've always been atypical.  However, 4 weeks ago I noticed a small raised lump near my SNB scar under my elbow.  Then a few weeks later I noticed another small bb sized lump near the other one.  Now today I find I have another lump closer to my arm pit,  

None of the lumps are darkly pigmented or very large (under pencil eraser size).  However the first one, is asymetrical, raised and unevenly red and tan colored.  The other two are not colored at all, just raised.  And of course they are near my SNB scar (the SNB spot that was negative).

Ok now my questions: obviously I will have a Mel Dr look at these three bumpy things.  My question is how soon should I do this?  I'm in Thailand, not near a medical center with any kind of expertize in Mel.  However, I'm going back to the US, for medical checks and PET/CT scans in early Feb.  Should I wait?

What do intransits look like? If these things are intransits, how quickly should I get myself to my Mel Dr? How fast does Mel spread?  

Advice?

Thank you friends!

Blessings,

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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