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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Bob B.'s picture
Replies 3
Last reply 2/15/2017 - 6:03am
Replies by: _Paul_, Charlie S, Anonymous

Several years ago I received melanoma (also basal cell) excision surgeries at Moores Cancer Center.   Previous to that I received several other melanoma excision surgeries.  All told, I’ve had 6 surgeries for melanoma.  

As we know, melanoma may return to a different location at any time.   One occurrence is usually followed by more.

(1)  Is aggressive melanoma considered a “chronic condition” for purposes of State or Federal Insurance coverage (MediCal, MediCare, etc)?                   

(2)   If so, how long between the appearance of new, non-recurring melanoma tumors does Melanoma continue to be defined as a “chronic condition”?

Thank you for your help.

Best wishes,

Robert James Beadle

The Only Good Legend is a Dead Legend.

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lisaha's picture
Replies 4
Last reply 2/14/2017 - 6:38pm
Replies by: lisaha, Janner, youngann

Hi All,

I have studied my shave biopsy report and done a lot of reading of journals online as well as here on this group.

My diagnosis is "mostly in situ" with "rare, few cells/focal invasion" into the dermis.  Breslow=.15 and Clark II.  

I am undergoing a MOhs in a couple of days.

My concern with my biopsy, which is basically otherwise negative (no ulceration, etc... 0 mitotic rate "seen") --

The Deep Margins are not clear--there is malignant melanoma to 0.1mm of deep margin and it also has melanoma in situ present on it.

Doesn't this pretty clearly indicate that my Breslow's level as it is currently is probably going to be upstaged during the Mohs???

Need help--thanks!!





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Supportivefiance's picture
Replies 9
Last reply 2/14/2017 - 4:00pm

So... Life has been a wild ride. My fiancee (26) and I got engaged last July. Date is set for July 22nd. We end up losing our beautiful Golden Doodle tragically a few weeks after our engagement. After having 3 Drs. refuse to biopsy her mole, I finally pushed her into getting it removed. Well... you know the story. She was diagnosed Ib 0.9mm breslow, clark IV, miotic 6, nonulcerated, Superficial spreading... Margins clear on original and I believe on the WLE as well. We were told she was clear nodes, but path called back and claimed they found 4 microscopic cells. (she was a little vague on this and I haven't seen the whole report). Onc. Surgeon said that she would be a soft 3a diagnosis. They took 2 nodes and I believe the SLN was the one with the melanoma cells. The surgeon is recommending against CLND as she has only seen 1/71 patients ever have other positive nodes. Right now I think we are leaning that way. I really want her to get on yervoy and anything else you can do at this point in 3a. Her labs have looked good, but she has not had a PET scan. She will meet with the Melanoma specialist sometime next week. She lives and works at Mayo in Rochester, so I know that she is at a good place. If anyone could offer advice or encouragement it would be helpful. Thank you all so much. I hope you all the best in your treatment! 

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LindaSR's picture
Replies 6
Last reply 2/14/2017 - 1:12pm

My husband has been on the combination targeted therapy for nine months.  His October PET scan showed all mets gone except for two and those two significantly reduced.  His most recent PET scan last week showed a new hotspot in T9 with a score of 18.5 (in addition to 10 mets in brain found on MRI after a fall).  Our onco wants to stay on the combination and wait 3 months for another PET scan as he "does not want to give up on the targeted therapy yet."  I do not think this is wise and want to start him on combo. Ipi/Nivo immunotherapy immediately if not sooner.  If immunotherapy works it will also work on the brain mets (he is currently on day eight of wbr - i pushed for srs but onco said too many mets) Thoughts on if resistance is gradual or not and does it make sense to continue targeted therapy and wait and see.  I don't think melanoma is a wait and see cancer, it is a more aggressive cancer.  As far as having an oncologist who specializes in melanoma, I wish.  We live in BF west virginia and as it is travel 2.5 hours to Roanoke, VA to see oncologist.  No husband can no longer drive due to small seizure that occurred after his recent fall.  Any thoughts on resistance will be helpful.  I think I am going to have our onco. consult with Dr. Tarhini at UPMC at the Hillman Cancer Center for advice.  

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JustJaren's picture
Replies 7
Last reply 2/14/2017 - 11:40am
Replies by: Anonymous, brendon, UBContributor, Aloha14, Toby0987, jennunicorn

Still awaiting my appointment with an Emory specialist for a 2nd opinion, but everyone I talk to says they WILL reco a groin dissection for my 4 cancer cells in the subcapsular region of the SLN.

I am PETRIFIED of lymphadema as I am an avid bicyclist/hiker/love to work in the yard. 

Can anyoine tell me if they have lymphedema and have gone on to enjoy biking and hiking?

I am boggled on what to do. WIth my original lesion being .86 with an 'ocassional cell' giving it a mitotic rate of 1 and a clark level 4, I am still not convinced that a groin dissection is the answer, considering the risk of life altering complications.



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Judy Steven's wife's picture
Replies 12
Last reply 2/14/2017 - 8:37am

Hi, I'm new here and have been reading a lot here already. My husband is diagnosed with stage 4 melanoma in the beginning of January. I thought he'd had a stroke, because he started being confused and had double vision. MRI showed mets in brain (one big, some smaller ones), CT and PET showed mets in kidney, adrenal, thyroid and lung, and some in lymf nodes in body. Had WBRT for 10 days and that seemed to work, he got less confused and is more clear again, luckily..... quite scary when he was so confused, he also had swelling of the brain and steroids helped with that. Now we are tapering off the steroids in order to start with ipi/nivo. We are a little nervous about that, read some good reports and dramatic ones. My question is, is there anything you can do to support the body during the immunotherapy, any additional therapies, certain foods, whatever may help to prevent side-effects. Any experiences?

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

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Aloha14's picture
Replies 5
Last reply 2/14/2017 - 1:54am

I wonder if it's necessary to wear compression pants/shorts since I still have the seromas on my upper leg? I'm planning on wearing my bicycle shorts anyways tomorrow since I wouldn't want them to get larger again. Does anyone know if it's necessary to wear compression clothing forever once you've had lymph nodes removed?

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Christine.P's picture
Replies 1
Last reply 2/13/2017 - 6:43pm
Replies by: debwray

Hey, everyone. I am wondering if others have experiences ptosis (drooping eyelid) with headaches while on ipi/nivo or nivo alone. I am stage 4 and was able to complete 3 of 4 doses of ipi/nivo (the last of which was in September 2016). I have been on nivo for over a year. (Long stroy re: why my ipi/nivo combo was done halfway into my first year of treatment; I'll spare you that here.)

For the last couple of months I've noticed that my left eyelid is quite droopy but didn't really think anything of it. I just attributed it to being a 53-year-old woman until my oncologist noticed it at my last treatment. An MRI of the brain was clear (whew!) but now I will be seeing a neuro-oncologist on the 21st. Am I safe to assume no brain mets since the MRI was clear? 

I have always been prone to headached (including migraines with and without aura), so I hadn't thought much of the recent headaches either. I'm curious if they can be connected to the ptosis. 

I know I will eventually get answers, but like most of us, I like to know as much as I can before I go into the neuro appointment - if only to be able to ask intelligent questions. I have tried searching for ptosis as a side effect of nivo, etc. but can't find much. 

Has anyone else experienced anything similar? If so, what caused yours? What did they do to treat it (if anything)? Any shared experience or advice is welcome. 

Thank you. 

Christine P. 

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45_dps's picture
Replies 1
Last reply 2/13/2017 - 6:01pm
Replies by: casagrayson

Thank you all for your posts. There are a lot of lurkers here (like me) who are constantly searching for more information, and your posts help us to learn (e.g. I've started taking vitamin D and probiotics in advance of my upcoming Ipi infusions, and my wife knows what to watch out for in terms of bad potential side effects).

Last Thursday I had a complete lymph node dissection of the left side of my neck (and "2/3" of a particular neck muscle taken out as well) just got home from the hospital today. Results will come in by the end of this week and at least one node will be positive because it was previously tested positive following a partial excision of that particular node in January.

Now I'm just trying to heal as much as possible, in advance of the Ipi therapy.

-Dan (IIIb)

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Anyone have lengthened benefit of 1 week ON, 3 weeks OFF, 4 weeks ON dabrafenib/trametinib?

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BBrakhane's picture
Replies 17
Last reply 2/13/2017 - 2:42pm

Hello, I just discovered this  site yesterday.  Its very humbling reading a lot of these stories.  I know that as scary as it has been I have been so very fortunate, and truly consider myself blessed in how this has gone so far.  I apologize in advance for how detailed Im going to be, but as I have been reading, I found myself wanting more details from other peoples stories, I guess to find out if there were similarities, in timing, discoveries, treatments, etc, etc,....

 I originally noticed a very tiny red dot in the middle of a mole in January of 2014.  My father had had several small melanoma spots removed around 20 years ago, so I knew I was at risk.  I am a neurosurgical consultant, so I know almost all of the surgeons where I live.  I called the one Im closest with and told him I had melanoma.  He said, "Hold on, can we at least do a biopsy first?"  So we did the biopsy a few days later and it did come back as melanoma, surgery was scheduled for the next week.  In the time between the biopsy and the surgery, while in the shower, a felt a knot in my right groin, I knew that was not a good thing!  I called him and let him know immediately.  He decided we better do a PET before the surgery, so we had a better idea at what exactly we might be dealing with.  The PET revealed two spots, the mole on my right calf and a spot in my right groin, while not good news, it was better than finding out there were spots everywhere, and at least we knew what we were facing.  He decided to take all the right groin lymph nodes in the surgery as well.  The calf resection margins were clear, and only the one lymph node had evidence of disease, all the rest were clear.  I was referred to Dr Linette at the Siteman Cancer Clinic in St Louis for follow up.  He explained everything, and told me that they had tested my tumor and I was BRAF positive, I had NO idea what BRAF was, so I thought that was bad news, typically positive in a medical test, is bad news, isnt it?  That was what I thought anyway.  He explained the different drugs at the time and said that he really didnt think I needed to be on them, but if I wanted to, for peace of mind, that was fine and he would support that decision.  I decided to hold off and just stick with seeing a dermatologist and surgeon for follow up. 

Jump forward 18 months or so, and while in the hospital for an exam, an abdominal CT was done, and the bottom of my lung bases were incidentally observed, a small spot (7 mm) was noticed.  This was extraneous to the reason for the exam, but with my history they decided to do another CT the next day on my chest to see if there was anything else of note.  There wasnt, so the doctors said, its so small and only one, lets give it three months and see if there are any changes.  Three months later, this was October of 2016, we did one more CT and that spot was still there, measuring 7.8 mm, but again, nothing else.  Most of the Interventional Radiologists I work with said its too small to biopsy yet, lets give it a little more time, one of them said, no, I can get it, I think we should check it.  So we did, it was a tough case, but he was able to get enough cells to get the info that it was indeed, melanoma.  Back to Siteman!  Dr Linette had moved on to another opportunity, and I met my new doctor, Dr Keller.  I really liked him, which was great because I had really liked Dr Linette, and hated to hear he had departed.  We agreed that a resection was the way to go, so that case was set up, in the mean time I had another PET done, and no other spots were detected.  However, Dr Keller asked if I had ever had a brain MRI, I told him no, only the head part of the PET, he said he would feel better if we did the MRI, just in case.  So we did, and of course, another tiny spot (2mm) was found in the cerebellum.  Lung surgery was cancelled and an appt with a neurosurgeon was scheduled.  He offered radiation, I only knew of fractionated, 30 day or so multiple treatment type of radiation, and I was taken aback at the thought of that, for a 2 mm lesion, when I knew from both of the Oncologists that there were drug options, and pretty good ones at that.  Once he explained no, it was Gamma Knife, I said heck, lets do that today!  We actually were able to do that the following week, that was done on Dec 15 2016.  Everything went very smoothly there, and we were able to reschedule my lung resection for Dec 22.  That surgery was kind of painful, but in the grand scheme of things, Ill take it without complaint!  Tumor was about 8mm, but the total wedge removed was 11cm X 7.5cm X 3cm.  Margins were clear.  Dr Keller and I agreed, that even though there was no other known disease, it was probably a good idea to go ahead and start on some medication.  He recommended Tafinlar and Mekinist.  The surgeon asked that I not start them until after my follow up, just to be on the safe side for healing of the surgical sites.  So, I have now been on the meds for one week.  So far, so good, no issues, I am knocking on wood as I type this!  Dr Keller has been very clear, that there is no other KNOWN disease at this time, and I am taking these, to ideally take care of anything floating out there, that we dont know about yet.

I spend a lot of time thinking about all of this, a lot of people have said that I am unlucky, but I truly believe I am VERY lucky in the manner in which these things have been discovered, and that even though none of this is what anyone would want to go through, how blessed I am at the options that I have, as far as treatment and great doctors!

Thanks for your stories, this was the first page I happened on to, where I was able to see what other people have encountered.  It was educational, and I really appreciate the page and those of you here!

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Maria C's picture
Replies 7
Last reply 2/13/2017 - 2:34am

Hi Everyone,

Just popping in because I think of all of you often, even though I've been out and about "living life" as they say. Wanted to share some good news & a bit of hope, as such posts were so helpful to me when I first joined these boards in 2015.

I am 6 months from an intense summer battling some stubborn brain mets - 5 altogether with 4 recurrences, 2 that bled and needed back-to-back crainiotimies in June/July, followed by partial (not whole) brain radiation in August. It was a real touch-and-go summer during which I prepared my will and everything else you do when you really don't think you're going to make it.

Well last week I got the results of my second follow-up brain MRI after the surgeries, and everything is stable and clear! A little necrosis surrounding one spot but nothing out of the ordinary or unexpected, and most importantly, NOTHING NEW! My body, too, has remained stable and clear for a year now (since last February).

I am feeling better and more hopeful than I have since I was first diagnosed with muscosal melanoma in spring of 2015. I am back to work full-time, and my energy level is nearly back to normal (except a day or two after my maintenance pembro every 3 weeks when I'm hit with fatigue, like today).

Healthwise, 2017 is off to a fabulous start after an extraordianarily rocky 2016 that, on top of the brain met scenario, included some of the most extreme side effects of the ipi/nivo protocol. Along the way, these boards taught and encouraged me to get second opinions for optimum care.

All this is to say....hang in there fellow warriors!! You are all in my heart daily and I do check in every now and then without posting, to both follow many of your stories as well as stay informed with the latest research and anecdotal tales. Whenever you're here, you're doing what you're supposed to be doing - connecting and educating yourself to be your own best advocate.

So be well, be aware, and believe :-)



Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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Buddy0513's picture
Replies 7
Last reply 2/12/2017 - 9:33pm

Hey everyone,

Normally I wouldn't panic, but it's been a bad week. After my mom received her scans indicating everything had shrunk, no activity in lymph nodes etc...her doctor decided to do 2 more round of ipi/nivo (he stated he wanted to make sure all of the cancer is gone and would continue scans in future). She had some colitis when she received her nivo treatments, but was easily controlled by prednisone.

However this ipi/nivo, which was about 1.5 months after the 4th dose, caused severe colitis for the entire weekend. She went to the hospital Wednesday and was given fluids. By today, she was dehydrated again. They decided to admit her for 5 to 7 days because she is so weak. She said she was given 60 mg twice a day prednisone, some anti-poo medicine (literally what she called it) and an antibiotic.

Has anyone else experienced anything like this? I know the side effects get worse over time and colitis is a big one of them (thank you Bubbles for posting this information!). I'm just terrified we got such good news and now she has gone downhill worse than she has been through this entire ordeal.

Any help is appreciated...


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BarbaraF's picture
Replies 5
Last reply 2/12/2017 - 5:57pm
Replies by: stevenallenschwartz, Anonymous, debwray, BarbaraF

I fear that, due to lack of information, this patient who is diagnosed at Stage III is really Stage IV and could get better meds (MK-3475 Pembro) right away. Is it true that Pembro can be prescribed for Stage IV? 

background: After surviving TCC cancer on the kidney 12 years ago, and, after extensive chemo emerging with No Evidence of Disease, he was diagnosed in 2011 with Barrett's esophagus, a pre-cancerous condition. His oncologist told him to FOR SURE continue with the endoscopy checkups. He has the symptoms of Barrett's disease.  

In October 2016 he had surgery to remove invasive malignant melanoma and was Stage IIC. PET scans were clear. Three months later, Feb 1 2017, had another resection for melanomas that returned quickly, and now he is Stage IIIC.

He wants to get MK-3475 (Pembro) but Stage III can't get it unless he is in a randomized clinical trial (S1404) which might give him IPI instead. Is it true that Pembro can be prescribed for Stage 4? Wouldn't it be better to get a Stage 4 diagnosis NOW and get on the Pembro NOW rather than wait to be put on the trial, be randomized to IPI , and discover that because IPI didn't work and he is now Stage 4? 



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