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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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...

Melissa

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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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bing_bang_bum's picture
Replies 4
Last reply 2/12/2017 - 3:52pm
Replies by: bing_bang_bum, Janner, Anonymous

Hi all. Just wanted to say this site is amazing and I appreciate so much the information I've gathered from lurking. This is my first post.

Last week I went in for a full body check, with one mole I specifically had my eye on (a dark mole on my butt, the only raised mole on my entire body although I have tons of freckles). Doctor wound up doing two shave biopsies (said butt mole, plus another on my back that was benign). He called today with the results.

He informed me that he was glad I came in when I did because the mole on my butt was "almost/borderline melanoma." This, obviously, scared the living hell out of me so I asked him what exactly it was. It's a severe dysplastic/atypical melanocytic nevus. Upon my research, this doesn't seem like that big of a deal, and it seems it's pretty damn rare that any atypical nevus will, itself, turn into melanoma. Especially for me, since this is my only one. So I'm struggling to understand how that could translate to "almost cancer."

A couple questions for you all:

1. I am livid with the way he described the diagnosis to me. In my opinion, the word cancer should never have even been mentioned. Am I missing something? Is "almost cancer" even a thing?

2. He did a pretty deep excision for a shave biopsy; I have nearly half of an inch in diameter missing from my ass, and it goes a bit below the surface. But he said that I need to come in for a deeper excision. Is that standard for my diagnosis? Or is it something I should get a second opinion on? Or wait until it heals and just watch for a resurgence of pigment?

Thank you in advance for any help you can provide me with.

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Anonymous's picture
Replies 3
Last reply 2/11/2017 - 9:34pm

What is overall survival when having neck disection for primary back neck. Also 25 rounds radiation. Tried interferon high dose made it two treatments and made me sick. No other options for stage 3 in canada.

Having neck disection and radiation does it really help melanoma and kill it.

Lisa McCann

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rabbits68's picture
Replies 5
Last reply 2/11/2017 - 10:53am
Replies by: rabbits68, Bubbles, debwray

A few weeks ago I started with groin and abdominal pain, this is after 8 treatments of Keytruda.  Scan showed existing tumors stable but new involvement with 3 Lymph nodes.  One is quite large and is supposedly the source of my pain.  My doctor does not consider Keytruda a failure at this point so we are continuing with infusions. I just finished 3 weeks radiation on the nodes and am still not getting the  relief I expected .  Am I expecting too much too soon?  Does anyone have personal experience to share?  Thanks Lisa

LisaG

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ToddG's picture
Replies 8
Last reply 2/10/2017 - 11:44pm

Background:  Had a suspicious mole on the backside of my rt shoulder in August of 2016.  Wanted to go have it checked out as it was new ( i have a lot of moles) and abnormal.  I had seen a dermatologist 2 years prior to remove a couple of new growths on my forhead and top of my scalp, which I thought nothing of, especially in the way of melanoma.  Never heard back from them and I was too naive to call.  I'm guessing benign.  Well, due to our family's busy schedule (2 young kids in sports and hunting season coming up), I failed to schedule.  Lo and behold, after about three weeks, the mole disappeared!  Nothing to have removed now, I thought, and it was forgotten about.

By mid October, I began to feel swelling in my rt armpit.  I am allergic to fire ants, and having battled them here in Texas, I knew it was a lymph node.  Still clueless about cancer, I made an appointment with my GP for Nov 3 after noticing no shrinkage in a weeks time.  The GP held of on refering me anywhere as he thought maybe I had a virus, telling me to come back in 10days if there was no change.  10 days later, he sends me for an ultrasound.  The ultrasound led to the biopsy on the next day.  On the eve of Thanksgiving, I was phoned by the on-call Dr.  He was very grim, giving me the diagnosis of Stage IV metastatic melanoma.

PET scan showed lit up nodes from the mid rt side chest up to clavical and under rt arm.  Brain MRI was clean. BRAF mutation positive (after a loooooong delay from lab/insurance problems).  Started on Tafinlar the day before Christmas eve.  It was 2 more weeks before insurance approved and I was able to add Mekinist to my intake. High fevers, night sweats, a couple vomiting spells, wetting the bed, constipation, and general aches and pains soon followed.  By the middle of January, with the addition of prednisone, another anti nausea med, and ibuprofen, my body was getting used to everything. It was about then I had my second Onc appt.  He was surprised my swollen node was unchanged, but I had only had the Mek on board for just over a week.  Nothing else to report.

Then, one morning I woke up with broken blood vessels in my left eye.  I sent in pictures, Dr said to report any other changes but not to worry, it was probably from straining.  The next week (last week), I developed several small, swollen nodules on both mid thighs in the shape of a horse shoe, not equal on either leg but similar.  They were like 6-8 marbles just under the skin and very painful.  Doc took me off the Taf/Mek for the week prior to yesterday's appointment.  Still surprised the axillary lymph had not reduced and concerned over the Erythema Nodusum (his diagnosis of my now disappearing thigh bumps (driven by another week of predisone), The Oncologist took me off Taf/Mek and started me on Zelboraf and Cotellic.  I had an EKG done in his office yesterday and will have a MUGA scan on Monday.  I heard the scheduler saying I needed the MUGA (heart pumping video) as a baseline for the cardiotoxic meds I would be taking.

 

I researched but did not find much on the forum here about my new meds.  Did I use the wrong nomenclature?  Anyway, what can I expect from the new meds?  Are the new meds as effective as the Taf/Mek combo?  Why would the onc be concerned about the EN diagnosis, as it is basically harmless?  Any other input is very welcome.  I know I am a newbie here, but have learned quite a bit reading through post by my brothers and sisters here in the fight. 

Stay strong, Keep your focus, and Fight On!

 

ToddG

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Nicklindner's picture
Replies 9
Last reply 2/10/2017 - 7:05pm
Replies by: Nicklindner, Mat, debwray, jennunicorn, Anonymous, Hukill

Started throwing up blood this morning. Went right to my cancer center and got labs taken. Liver levels are high. Getting an endoscopy to figure out what is going on. Has anybody had these side effects to ipi/nivo? Supposed to get my 4th dose in a week but not looking great for that. 

Thanks for any help. 

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