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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Eileensulliv's picture
Replies 3
Last reply 3/19/2015 - 11:36am

I had my first dose of ipi and Nivo at the end of February. I was supposed to have my second treatment this Thursday, but my thyroid levels are not normal, so I cannot get my treatment. This Saturday I'll go for another thyroid blood test and Monday morning my doctor will call with the results, and whether or not I can have my treatment next Thursday. 

In the time from my first treatment, I have experienced fevers (highest was 102.5), fatigue, vomiting, loss of appetite, sweats and chills, racing heart, shaky hands, shortness of breath, and rash and itching. I started to feel MUCH better Sunday and Monday, but today I don't feel as good. My doc put me on a beta blocker to help regulate my thyroid. My T3 and T4 levels are quite high, and my TSH is very low. 

Has anybody else had thyroid issues while on ipi/Nivo? If so, what worked for you? I've been researching foods that will help, but just wondering if anybody has some advice. Thank you very much!


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Replies by: mary1233

Temozolomide Plus Cisplatin as Systemic Adjuvant Therapy for Resected Mucosal Melanoma

I know several people that have recently been started on the above treatmetn.  They have been being asked why they are being given these OLD drugs.  This article is the study that is the basis for this treatment for mucosal melanoma patients.  I have not seen it tied to specific Mutations, but learning what mutations have been involved in these trials will be very interesting.  (Suspect C-kit, NRAS and BRAF to be the 3 main over-expresions/mutations involve)


The endpoints were relapse-free survival (RFS), overall survival (OS), and toxicities.

Results: One hundred and eighty-nine patients were enrolled and finally analyzed. With a median follow-up of 26.8 months, the median RFS was 5.4, 9.4, and 20.8 months for group A, B, and C, respectively. Estimated median OS for group A, B, and C was 21.2, 40.4, and 48.7 months, respectively. Patients treated with temozolomide plus cisplatin showed significant improvements in RFS (P < 0.001) and OS (P < 0.01) than those treated with either HDI or surgery alone. Toxicities were generally mild to moderate.

Conclusion: Both temozolomide-based chemotherapy and HDI are effective and safe as adjuvant therapies for resected mucosal melanoma as compared with observation alone. However, HDI tends to be less effective than temozolomide-based chemotherapy for patients with resected mucosal melanoma in respect to RFS. The temozolomide plus cisplatin regimen might be a better choice for patients with resected mucosal melanoma. Clin Cancer Res; 19(16); 4488–98. ©2013 AACR.


Translational Relevance

Mucosal melanoma is rare and of extremely poor prognosis. However, standard adjuvant therapy for mucosal melanoma has not been established. The importance of our study is that we provide clinical data showing that high-dose IFN-α2b (HDI) and temozolomide plus cisplatin may be advised to patients with mucosal melanoma in stages II/III and after surgical removal of primary mucosal melanoma. The significance of the study is that temozolomide plus cisplatin regimen, likely better than HDI, may be a choice of adjuvant therapy for patients with mucosal melanoma in respect to relapse-free survival (RFS) and possibly overall survival (OS). Our study shows that both adjuvant regimens are safe and well tolerated for patients with resected mucosal melanoma. Even for patients harboring c-kit or BRAF mutations that are potential targets for targeted therapies, the temozolomide plus cisplatin regimen may be a better choice than HDI. Our trial is unique in that it addresses adjuvant therapy for a specific, uncommon subtype of melanoma.


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

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Lesanne's picture
Replies 4
Last reply 3/18/2015 - 1:10am

My husband started with the Tramitinib and Debrafenib combo trial a month ago.  I noticed there are quite severe side effects.  He was on the treatment for a month and was running a very high temperature and getting chills all day yesterday.  I would like to know from other patients using this combo, whether running such high temperatures  and chills carry on or is it not so frequent?  He lectures and had to miss 2 of his classes as a result.  I have done quite a lot of research on this combo - and am concerned that this could be an ongoing experience for him which could affect his lecturing.  Your comments will be appreciated!

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Last week I mentioned when I saw them to both my med and radiation docs my left foot hurts. When I touch it it is kind of like touching a nerve instead of my foot. Especially my 3 smallest toes and a few places on top and the left side of my foot. Well the med doc was actually his assistant and he didn't say anything about it. My radiation doc's nurse just said that was new. So nether are planning to help so i figured it might heal itself like other stuff has but this has been going on for at least 10 days.

I think it must have started when I was on the fentanyl pain patch and when I came off them I could feel it. So I'm not exactly sure when it started. During that time they had me on 3 types of pain meds at the same time because of the syatic nerve painin my left hip and leg. There was fentanyl patch, morphine and some pill for nerve pain oh and some oxycodone I already had. Once I found a specific cushion provided lots of pain relief I got off everything except the fentanyl. I was on the nerve pain about 5 days. The morphine 2 days. The oxy I had been on a couple months. I was on the fentanyl patch a couple months and quit it ten days ago. They were also radiating the t4 and 5 vertebrae for that nerve. Plus the right femur for painin that hip. Plus the initial spot of the left shoulder and neck. So now I'm just on Keytruda month 10 and xgeva month 13.

Ive tried increasing my walking to 6 ten minute walks a day. Not easy with my left hip pain. But walking is supposed to help nerves. I put the heating pad on it but doesn't reall help. I can't really reach it with my back and shoulder issues so I can't massage it or soak it or apply lotions to it like I would want to. I hate asking my parents cause they do enough taking care of me unless I knew of something that would work good so not to waste their effort. I took Tylenol but that really didn't help either. I haven't tried ibuprofen yet.

Any ideas what I can do to relieve this pain and maybe heal the nerves?


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Anonymous's picture
Replies 7
Last reply 4/10/2015 - 9:58am
Replies by: Indiana82, jogo, Fen, yazziemac, dvd

Recently diagnosed (January 2015).  Tumor in parotid gland (salivary gland) turned out to be metastatic  melanoma. Had surgery to remove parotid gland (partial) and tumor (with clean margins).  No evidence of primary melanoma found (nothing on skin, eyes, throat, nose).  Clean brain MRI and body PET scans. NED. Going to Mayo next week for another opinion about further surgery and any possible adjuvent treatment.  This past week had a consult with a second ENT surgeon who wanted to remove 15-25 lymph nodes from the neck area near the original surgery site, but decided to wait on this after hearing my original ENT surgeon's thoughts on this.

Has anyone else had a melanoma in the parotid gland, and if so what has your treatment been?

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Anonymous's picture
Replies 2
Last reply 3/20/2015 - 6:58am
Replies by: bonusfries, Anonymous

...whoever you are posing as this time:

Get the hell out off this board. Everyone here is dealing with a very serious illness and is not interested in any crap that you happen to be peddling.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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eric w's picture
Replies 4
Last reply 3/18/2015 - 3:22pm

Hi all,


My wife has had #14 doses of Mk-3475 and developed pneumontis. She just finished a two week course of prednisone and will get repeat CT of the chest area in a few weeks. Curious other folks experiences with pd-1 and pneumontis and associated responses. Thanks

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Thank you for taking the time to read this, I am having a real difficult time right now and am hopeing someone has some experience they can share with me on this topic.  I feel weird saying that because I find it uncomfortable wanting someone to have the same experience since I would never want my worst ememy to go through this, but I hope you guys will understand where my heart is coming from. My dad was diagnosed in December with Stage 4 Melanoma with mets to the brain (18 tumors) and lung (1 large tumor). He is 64 years old. He had Neurosurgery where they removed 14 out of the 18 tumors, the other 4 are too close to the brain stem to operate on. He had 15 whole brain radiations done. His biggest complaint is being fatiged, food not tasting good, and lack of sleep. He has been on Decadron and MD's have attempted to slowly wean him off of it. Every time he is off the steroids, his balance is effected (he has fallen) he becomes forgetful and has severe neurologic changes, requiring he goes back on the steroid, to give him the best quality of life. Has anyone had this experience? I know its bad for people to stay on the steroids long term, risk for infection etc. Will he be able to wean off successfully at some point? I imagine he still has substantial brain swelling (neurosurgery done on Feb 7th) if this powerful steroid (8mg) daily is being required. He is also on Yervoy recieved 2/4 treatments with no adverse effects. Thank you. 

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StephyD83's picture
Replies 7
Last reply 3/15/2015 - 10:17pm
Replies by: Anonymous, StephyD83, Mat, JoshF

Hi all-
This past week out of the blue the right side of my chin and bottom lip keep going numb on and off. It is the strangest thing. I am concerned as my melanoma was on the right side of my face. I have looked it up and all I can find is Numb Chin Syndrome. Basically days is a sign that cancer has spread. Have any of you experienced this or know about this?

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yazziemac's picture
Replies 2
Last reply 3/17/2015 - 8:23am

Hi all

Has anyone heard of using photodynamic therapy (PDT) to treat melanoma?  If so, what have you heard?  


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bonusfries's picture
Replies 5
Last reply 3/20/2015 - 7:04am

My initial diagnosis was July '13. Had a very high risk initial tumor (11mm depth, and raised from the skin too). Fortunately the WLE, SLNB and every PET scan (last one Sep 14) since then has been NED.

That was until vision problems led to an MRI 3 weeks ago. 2 brain mets, different lobes, with the visual problems being driven by one of them filling with fluid. The larger had swelled to about ping pong ball size, with the second being 1 cm. Minus the fluid they were both probably equal in size.

The subocciptal craniotomy went extremely well. Surgery on Tuesday and I'm back home Friday night at a pizza party for my son. A full body CT scan (CT only not PET) only showed that a subcutaneous node might be forming near my original site (lower abdomen), otherwise NED.

The next Friday after discharge, I had SRT performed on the second area - front right lobe. I am a math / science guy and was completely fascinated by this procedure and enjoyed every minute of it.

My lab results from the removed brain met came back BRAF positive. Our plan of attack is to start on the BRAF + MEK combo in the next 2 weeks.

So aside from the initial bad news in the ER that my melanoma had spread, this just seems like wave after wave of good news in terms of attacking it in the short term with quite effective methods. Long term who knows, and I'm a "glass half full" kind of guy so I'm not even contemplating my future. I feel like I have as good odds as I'm going to get in terms of beating it back right now, and hopefully keeping it back. I hope everyone dealing with this has the same encouraging news if you ever hit stage 4 also.


Stay strong



Just do it

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jbronicki's picture
Replies 3
Last reply 4/21/2015 - 10:26am
Replies by: dentholla, JoshF, yazziemac

Hi all,

Just to keep the trend going, wanted to post about our news yesterday from MD Anderson.  Last year in February, my 48 yr old husband was diagnosed with Melanoma.  Believe it or not, he had a 19 mm (almost 2 cm) lesion on his upper left back.  Apparently, it had grown immensely in 6 months and my daughter noticed it while they were swimming and then he said it woke him up one night, felt like he was lying on a marble.  He actually never told me about it and I didn't see because he gets ready for work and leaves about an hour before I do.  So he went to a dermatologist up by his work.    I can still remember bursting into tears when I first saw it before his surgery and how I could have missed it.  He ended up telling me he had melanoma while we were watching a movie on Saturday night  and it finally made sense why that afternoon he told me where the life insurance policies were (I couldn't figure out why he was telling me where the policies were). I got on the phone with MD Anderson the following Monday after I had calmed down. The Saturday night he told me he gave me the path report the doctor had given him.    I had the path report (my husband actually never looked at it) and it had the highest ratings for everything, depth, Clark's, etc and all the prognostic factors were off the charts.  I was a medical librarian and I used to work with biostatisticians that work on outcome studies so I looked up the evidence-based research outcomes that night and knew it was not good.I got on the phone with MD Anderson the following Monday after I had calmed down and scheduled his surgery for the following week.  I also burst into tears randomly at work that week, it was pretty intense.

My husband has a scar almost across half his upper back, he actually went back to work the day after surgery.  The tumor had no skin component so our first appointment with oncology after the surgery but before the scans, they said he was probably stage 3 or 4 nodular melanoma (of course one of the most aggressive) and considered it metastatic melanoma.  SNB came back negative though and also his scans later that month came back negative. 

Just had our 1 year scans yesterday and they came back clear.  Never thought we would be here, still remember reading that pathology report and then researching the various outcomes with his numbers and breaking down.  Been a wonderfully hard year and we seem to live in 4 month increment, but hard to believe so far NED.  I hope we can pay it back to whoever needs it. 

Many hugs to all of you out there, I've been on this board for the past year.


Jackie <3

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clthomas2131's picture
Replies 0

Question..... has anyone had a vacora biopsy of a neck node? I had a fine needle, and was told they were going to do a core biopsy but they called to say I am getting a vacora biopsy done and I would be knocked out for it.... I can't seem to find much on it at all for neck biopsies.

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G-Samsa's picture
Replies 3
Last reply 3/13/2015 - 12:13pm
Replies by: arthurjedi007, Bubbles, Mat

I am sadly completing a successful 2.5 year run on the Anti-PD1/Ipi combo trial.  Although the visceral disease remains in-check, several mets have suddenly appeared and have taken hold in fatty tissue areas.  It's as if there are two distinct systems --- one in which the immune system is still effective at maintaining a tolerable tumor load, and one where it is beginning to lose its grip.  A reinduction of the combination drugs has been (after three infusions) unsuccessful at getting the immune system interested in these new tumors.   Although the new tumors are not life threatening, the doctors feel that it is important to have them removed.  The inaccessibility of the tumors (entangled with nerves, etc) suggests the need to "shrink and pluck", that is, reduce their size so that they can be surgically removed.   Since I am Braf positive, the outlined plan from the medical teamis to exit the trial and move me to a Braf/MEK inhibitor treatment regimen ( presumably it will shrink the tumors enough to be removed).  

Having been under the umbrella of a very effective treatment, I am clinging to my prior treatment like a cat on a cliff, and have expressed some reluctance to chase something not life-threatening, by forever giving up access to a treatment that has worked so well.  I've read many entries here about the limitations of the genetic treatment (that are typically effective for a limited period).  I've also heard it suggested that the Mel can sometime returns with a vengeance.  The doctors have talked me off the ceiling, indicating that together with the prior long-term immuno-therapy treatments, they expect the Braf/MEK to have a better long term effect, and indicate if it loses its grip, both ipi and anti-pd1 remain options (albeit as separate treatments)

Bringing this to the attention of the group for a couple of reasons--

I'd like feedback on whether this sounds like a reasonable approach (I believe we all have developed expertise fighting the disease -- and collective thought might be informative/supportive), also looking for experience/evidence that genetic treatment on top of immuno-therapy makes for a more durable response. I was thinking that I should suggest a set short-term use of the Braf/MEK, just to address the tumors,  hoping this would keep my powder dry, preserving the ability to use Braf/MEK at a later date if the critical tumors begin to stir.  

Thanks for your thoughts



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Anonymous's picture
Replies 4
Last reply 3/13/2015 - 12:02pm

I've had four doses of PD1 and just had my first set of scans, there was some growth in a met in my spine and a new 9mm lung met and a new 1.3cm adrenal gland met. I have mets through body in the bones and in the lungs other than what I have stated everything else was stable ( no growth). Any ideas on what I should do from here, any advice would be helpful.

Thank You

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