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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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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Casitas1's picture
Replies 11
Last reply 7/31/2016 - 8:04am

Hello all, Long day yesterday after Pet ct, two Mri and Infusion of Keytruda. Was meeting with all my Drs. Oncologist, Surgeon and Radiologist to see what next step was going to be. I was nervous while in office waiting results. My Dr. (Rock Star Doc.) came in with all the rest and looked a little serious to me! They all smiled at once and said all clear your NED!!!! I started to cry and they informed me that the only other surgey i will need is cosmetic(facial) You know I have kind of gotten used to the scars, crooked lips neck scars etc. No more cutting for me for a long while.

I just wanted to thank all on this forum for the wealth of knowledge and support over the last 6 yrs. Even though I have only been posting a little while I am hoping NED sticks around a while and finds all of you!

Best, Paul

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Everymoment's picture
Replies 2
Last reply 7/31/2016 - 5:04am
Replies by: Anonymous, Janner

I'm starting to realize the role genes play in our future. After having melanoma four times and having a breast cancer scare it got me having melanoma are we predisposed to other specific cancers?
Thank you.

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Patrick O.'s picture
Replies 14
Last reply 7/30/2016 - 12:13pm

Hello all. Just diagnosed with stage IV as of 7/13. Am seeing my OCL for the first time on 7/20. Just wondering what are a few of the most important things I need to ask him about.
I've been reading many of these posts and it has been a great source of info and hope.


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Ddw's picture
Replies 7
Last reply 7/30/2016 - 1:11am
Replies by: Anonymous, MoiraM, Janner, Ddw

I just had a wide excision surgery on my heel. And they removed two groin lymph nodes and I'm waiting on pathology. So far the only information I had from shave biopsy it was a clarks level 3 with not clear margins. This is so different from breast cancer that I just finished chemo for in march. I have tripple positive breast cancer which means all hormone driven plus her 2 positive. I don't know if the two cancers cross in any way. When they put the radioactive tracer in me my groin lit up and also my neck which I don't understand. With my breast cancer I had a small tumor but it had already spread to my lymph node. I'm so confuse. If anyone could help I would appreciate it. I had the black spot on my foot for years my breast cancer oncologist told me we would worry about it later.

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Anonymous's picture
Replies 3
Last reply 7/30/2016 - 12:26am
Replies by: Lhawkins, Janner, slh4448

I had a growth removed from scalp and doc said path results were superficial melanoma. He first did a shave biopsy and said it was "nothing to worry about as it was in situ" per the results of the initial path.    But he then excised the area and sent for a biopsy of the margins.  Again, said no problems - it was in situ.  I got copies of initial and 2nd biopsy report and it is stated on the first report "Superficially invasive melanoma arising in melanoma in situ, lentigo malign type, melanoma in situ pesent at peripheral biopsy margin." Stage pT1b, Breslow: .30mm, Mitoses, 1, no Ulceration.

Path report from 2nd biopsy states no evidence of residual invasive or in situ melalnoma.

Did the doc read the path report correctly?  How can it be both in situ and invasive?  And do I need a 2nd opinion or any other treatment? 





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desertsun's picture
Replies 2
Last reply 7/29/2016 - 9:27pm
Replies by: desertsun, Anonymous

Well after a year almost to the day of Keytruda my husband's stage 4 shows progression on his scan. He was diagnosed stage 4 in November 2013 (lungs) and completed 4 doses of Yervoy with no response. Next came genomics and targeted therapy with Mekinist for NRAS mutation. He does not have BRAF. This worked for about 10 months with the next and most recent treatment being Keytruda. He has had additional sequencing but now shows NO mutations that gave available medicines.

To back 2008 he was initially diagosed stage 3c and underwent radical neck, radiation and one entire long year of adjuvant interferon.

Back to current. Given the option of Opdivo combo or Temodar. We chose temodar at this time with the hopes to give him just a shot break from immunotherapy and maybe a very slight chance for some response from the temodar. Any input on temodar would be appreciated.

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