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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Chance16's picture
Replies 35
Last reply 8/3/2016 - 4:53pm

Good morning - Recently diagnosed and I am stage 3c WLE and sentinel node biopsy done (node positive) PET/CT scans negative. They are talking about doing a CLND; which I don't want to do. Reasons: #1 complications (if the nodes come back negative I would have to live with the side effects of the surgery) #2 there are probably cells already circulating in my body #3 some literature say it doesn't improve outcomes.  I'm going to Moffitt Cancer Center in Tampa for second opinion. Has anyone else decided not to do it? Any feelings, ideas, suggestions?? I would appreciate any and all feedback. Thank you


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Ace226's picture
Replies 10
Last reply 8/3/2016 - 1:09am
Replies by: kylez, Ace226, eric w, Mat, Casitas1

Hi Everyone,

 My dad has been doing well with metastatic melanoma for several years now but they told him that it now looks like leptomeningeal metastases which we are all very worried about CSF was negative and he doesn't have side effects of LM which is encouraging. 

 The doctors tried the Ipi/nivo combo (he had Ipi 2 yrs ago and was on opdivo for 8 wks this year)  but with in three weeks he started vomiting and having diarrhea now he has been in the hospital for one week and they are having trouble getting the diarrhea and vomiting under control. They say he has colitis. Has anyone had a side effect of vomiting from yervoy or this combo?  Tomorrow they may try Remicade if things don't get better today.

 I am very worried about him just wanted advice on if anyone had experience the similar side effects. And how they were treated  

 Also if anyone knows about better treatments for LM let me know. 

Thank you!!


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Anonymous's picture
Replies 2
Last reply 8/2/2016 - 7:48pm
Replies by: Anonymous, Polymath

I was diagnosed in March with stage 4 melanoma to the lymph nodes, stomach, bone and lungs.  I have done 3 ipi-nivo treatments and 1 nivo treatment.  I didn't get all four of the ipi-nivo combo because the side effects were too severe. My last treatment was on July 1st and that was the nivo only treatment. Since then I have been on steroids for colitis.  I'm not sure when my next treatment will be but oncologist hopes it will be soon. My last PET scan on July 13th showed almost a complete response.  There are still tumors left but they are so small they don't show up on the scan.  The lump under my left armpit is not gone completely but has shrunken a lot. The oncologist told me its probably dead tissue. What I'm wondering is that once the treatment is complete, do they remove the lymph nodes where the cancer first spread too? Or is this something they only do when someone is stage 3? I'm just not sure how much more the one under my arm is going to shrink.  Just a little confused.

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Anonymous's picture
Replies 21
Last reply 8/2/2016 - 4:36pm


My name is Maria and my mother was diagnosed with vulvar melanoma in Nov 2015. It all started with a woman's wellness check after she noticed a lump in her private part and was misdiagnosed. We live in Texas close to MD Anderson but unfortunately was denied because she does not have insurance and does not qualify for assistance program due to her immigrant residency status.  She was granted a gold card and we were able to get care from Harris county hospital. They diagnosed her with stage 3 and told her that surgery was not an option due to the delicate area so they recommended immunotherapy. The treatment was interrupted due to the immune system making her psoriasis flare up even worse (she already had a skin condition to begin with and the immunotherapy made it even worse) so the doctor decided to drop one of the drugs and keep her on ipi. In the meantime, the tumor was growing and was on lots of narcotics to keep the pain down so the doctors started radiation treatment on her to attempt to shrink the tumor down while on the immunotherapy. She received 6 weeks of immunotherapy and the tumor shrunk significantly. A couple of months later they repeated scans and found that the cancer had metastasized to her lungs and back even the the initial tumor and lymph node were almost undetectable. Because she receives care at a county hospital she has been seen by fellows and residents and unfortunately the first fellow we had ended her rotation when she told us the news about the spread. They recommended chemo as the next option but after 2 cycles I could see the chemo sucking the life out of my mom. The first visit with the new fellow was a nightmare. He pretty much told us that there's no cure for this and eventually the cancer will outgrown the chemo. After the two cycles and my mother barely unable to walk the doctors convinced us to just stop treatment and go home to enjoy life. My reaction to them is "so you're just giving up? Just like that?" And they went on to explain that quality of life at this point is the priority. We are not the richest people on earth, my mother has no insurance but she is one of the hardest working people I know. Does this really mean that there is really no hope for this woman because of lack of access to resources? The doctors have given up on her but I just refused to. I have turned in an application for Medicaid (since MD Anderson accepts this as form of insurance) but they said it takes 45 days to see if she gets accepted of denied.....I just graduated from pharmacy school in May and turned 25 this month.  this year has been the most challenging year of my life but I believe that it's not over until God says it's over. I am trying to explore clinal trials options but I don't know if they cost money and I am new to the process. If anyone has any information that may be helpful to my mother and my family I will really appreciate it. 

God Bless,



- ps I have read some of the stories on the threads and you all inspire me to keep fighting this ugly disease. Thank you for reading. 

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I feel good about having the chance to speak with my father's melanoma specialist face-to-face while visiting in Europe. The conversation went pretty well I thought.

A bit of a background. My father was diagnosed with Stage 3C back in January. He had seizures few weeks ago and they found 13 brain Mets ranging from 2 millimeters to 13 millimeters in size.

He finished two weeks of WBR and is feeling pretty well as of now. He is still on steroids and anti-seizure medication.

After talking to the doctor and telling her my opinion it seems her plan of action is to do a CT with contrast
to see how the tumors reacted to the radiation. She said if he had a good response they might consider doing stereo active radiation if there are spots left, followed by immunotherapy. If the response was not so great she prefers to start him on the BRAF inhibitors.

Seems she would preferred to keep the Inhibitors in our back pocket should we need them later. She feels if he is stable to get going with immunotherapy since it takes a while to kick in. If he progresses she would switch to the inhibitors.

I feel pretty good about this plan. What do you guys think? Any and all opinions, criticisms, agreements are welcome!

Thank you!!


Ps. I went to the dermatologist today and had my first ever skin check. I seriously thought I was going to have a panic attack right there in the office. They took one mole off my back, the doctor said the worst it would be is atypical. I feel very fortunate.

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sscottmusic's picture
Replies 5
Last reply 8/2/2016 - 7:58am
Replies by: stars, Anonymous, jennunicorn, Andrew1725

My first mm was in 2004. 3 weeks ago they found a 3rd. What does this mean for my future. 


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Sflynn's picture
Replies 12
Last reply 8/2/2016 - 5:28am

Hello everyone 

My husband was diagnosed in August 2015 stage IV melanoma with lung and brain mets, BRAF positive and can't find orgin. 

He received 1 Opdivo treatment which had to be terminated due to a severe reaction. It took approximately 6-8 weeks to clear it up with high doses of steroids. In this time he also received 10 WBRT and 2 SRS treatments. 

In November he started the Taflinar Mekinist combo. This made him severely lethargic, loss of appetite and dehydrated. He made it 4 weeks on the treatment before ending up admitted to the hospital on Christmas Eve with saddle pulmonary embolisms and DVTs. After multiple scans it showed that there was more brain mets, edema and hemorrhaging on his brain. They discontinued treatment and sent us home 6 days later on hospice care.

Which brings me to today.. He decided to try this treatment again and sign himself out of hospice. The latest pet scan, MRI and catscan showed significant progression and new signs of the metastic disease in both lungs (2 lesions one fairly large) and brain (15 mets-3 large that are hemorrhaging). Also in his right femoral chain. Hemorrhaging of lesions, swelling, Short term memory loss, seizures, loss of mobility are just some of the new symptoms. 

I support his decision to try this treatment again but  I can't help to think is it the right treatment?? I guess I just looking for some positive results or the honest truth from others that are in the same stage. 


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Rita and Charles's picture
Replies 8
Last reply 8/1/2016 - 10:24pm

After 9 months on Braf Combo, my husband was suffering still with such nausea and joint pain that he stopped.  He was 2 1/2 months without meds and we feared the worst PET Scan results.  The oncologists were as surprised as we were relieved - no progression, still stable!  The only thing that happened within the 2 months off is that he developed vitilligo..........but the good results are what we really loved.

The Combo worked!  We don't have scans scheduled now until October :)  Vacation from worry worry worry and fear......for now!


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Sflynn's picture
Replies 1
Last reply 8/1/2016 - 7:03pm
Replies by: Lee Parlier

Well.. My update to my last post is not how I thought it would be.. My husband tried a second round of Taf/Mek after it failing the 1st time. He made it 12 weeks this time. He had a repeat MRI and catscan After having to take him to the e.r. For severe head and ear pain. He was admitted due to complications to the progression of the disease. Even on treatment he developed new brain mets, total of 18 now. Ranging in size 10mm all the way up to 3x3cm and is starting to invade the dura on his right temporal lobe..All mets now have started all to hemorrhage. An increase in steroids and anti seizure meds seem to be doing nothing!! Docs are not hopeful being that he is almost 1 year diagnosed. This disease is horrible!!! 

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Replies by: fleurdelis82, Janner

Back in early November 2015 my boyfriend pointed at a weird mole on my waist. A mole had suspicious darker spot in the middle. The area around the mole also looked irritated so it was possible that the irritation and scabbing was from clothing (I recently botught a new pair of jeans and a tag rubbed right where the mole was). However, I made an appointment to check the mole out ASAP. While waiting, I subconsqiously scratched the mole (I am a scratcher) so by my appt the mole had a scab from scratching on top of it. The dermatologist did a shave biopsy (removed the whole thing and some margin of healthy skin around it) which turned out as a "traumatized benign compound nevus". The area healed fine and now there is a scar. There is a slightly brownish area in the center where the mole used to be but nothing suspicious. 

Recently, I have been worried that if that darker spot on the mole was a very early melanoma, my scratching could have removed most of it so that it wasn't detected on pathology. And now these few cancerous cells that were left will grow undetected until the disease is advanced. These thoughts are causing me a great deal of distress. 

Can anyone please help me understand if this is a valid concern or not? Thanks in advance for your help!



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Shaneswife's picture
Replies 13
Last reply 8/1/2016 - 12:09pm

My husband is having a right groin CNLD and I was wondering if he will need crutches to get around after? I want to order them from the health care store but wanted to ask first if any of you needed them after.

Thanks in advance.


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Anonymous's picture
Replies 1
Last reply 8/1/2016 - 8:52am
Replies by: Anonymous

Zelboraf helped for lung (2.5x3cm SUV max 24.3) and left armpit (2.2x2.7cm SUV max 38,7) metastasis and they are gone (we think so), but in right armpit (2.6x2.5cm SUV max36.8) it is g almoust half size bigger. Dr. sugested Roferon A (interferon) + zelboraf. Is it ok or better switch to another treatment (to which)?

Thank you.

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KAF's picture
Replies 13
Last reply 7/31/2016 - 11:48pm
Replies by: FromPerth, Maria C, KAF, Anonymous, desertsun, Aaron, Lee Parlier, MoiraM

I've been on the Opdivo/Yervoy combo since Early June.  I have stage 4 melanoma (to liver) w/BRAF.  I did great on the first two doses. After the 2nd dose I became hyperthyroid after being hypothyroid for over 10 years. I loved all the energy and was feeling amazing.  I did fine  on my third dose last Tuesday.  On friday night I got a headache - not a big deal.  Was with teen daughter and old friends all day at the Mall of America which can give anyone a headache. Thought nothing of it.  Headache got worse over the weekend and by Monday nothing would make it better (advil, aleve, etc...) By yesterday i was in so much pain and couldn't take it anymore so I contacted my oncolgist.  Went in for MRI & labs today and within 15 minutes of the MRI being done (I wasnt' even home yet) she called to say my pituitary was swollen and I had to go on predinosone immediately and had to stop treatment. She didn't say whether that was permanent but that we would reevaluate once the swelling went own.  I'm so angry that after feeling so amazing after the 2nd dose that a week after my 3rd I'm now on steroids and in essence cancelling the treatment.  I'm trying not to be down but this is the first day I've cried.  I'm trying to not let my daughter see and told her that I'm a fighter and I don't let a headache get the best of me.  Has anyone had positive results after only 2 treatments and when did you know?  What are my options now?  Single dose Opdivo or Keytruda maybe?  BRAF drugs?

I'm a fighter and I hate feeling helpless.  I was prepared for the rashes (which I had one and Atarax helped) and the stomach issue (which never came).  I wasn't prepared for this one.

Any words of advice or encouragement are needed!!!

thank you all.


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Anonymous's picture
Replies 1
Last reply 7/31/2016 - 9:05pm
Replies by: landlover

I am stage IIIa.  I was diagnosed in January 2016 with a 1.5mm melamona on my left ear, no ulceration, 4/sq mm mitotic rate.  I had surgery March 22, 2016 to excise the melamona and complete a SLNB.  2 of the 7 nodes were positive for micrometastatsis melanoma.   I then had a paratidectomy and CNLD on the left side of my neck.  All 54 lymph nodes were negative.  Recent CT scans and Pet Scans were negative.  

Since the CNLD in May,  I still cannot raise my left arm above 90 degrees to the side.  I'm doing daily stretching and exercises but haven't seen a lot of progress.   In addition, my smiile is lobsided as my left lower lip is impaired.  However, this seems to be getting better.

Does anyone have advice for these symptoms? 

My surgeon said the nerves were spared during surgery but were stretched and this weakness in normal.  However he didn't give me a recovery time.

As for next steps, I'm waiting to hear whether I'm eligible for a clinical trial comparing Keytruda to High Dose Interferon.  If I don't do the trial my options are high dose intereferon or watch and wait.  Ipi is not approved in Canada for stage III.

Any thoughts on next steps?






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Anonymous's picture
Replies 4
Last reply 7/31/2016 - 10:03am
Replies by: Anonymous, Everymoment, Esmith123

Hi, my name is Emily. I'm 23 years old and when I was a lot younger, I made the foolish decision to start using tanning beds. I haven't for a few years, but since I stopped I've been keeping a close eye on my skin. I'm currently feeling helpless. I keep seeing spots on my body, all under 2 mm. My GP will not refer me to a dermatologist unless a spot is 6 mm. I have told him about my tanning history, and he told me that it's rare to get melanoma at my age even after my use of tanning beds. But when I read online it says otherwise and now I feel completely doomed that suffering from melanoma is my fate. Can a spot that's 2mm be deadly? I'm in Canada and to see a specialist you have to get a doctor referral to get in to see a dermatologist. Should I be concerned about anything under 2mm? If I have melanoma, I want to catch it early and do what everything says online is to get skin cancer screenings but my doctor won't help me. What should I do? 

thank you in advance.. You all sound like lovely people on this site... 

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