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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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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casagrayson's picture
Replies 8
Last reply 2/18/2017 - 3:22pm

I just wanted to let everyone know that I did a little Facebook stalking (sorry, Joshie!) and Josh is currently at MD Anderson getting TIL treatment.  His pictures look like he's handling it well!

Let's keep the cheerleading going.  Hopefully after he gets home toward the end of the month he'll swing by and give a real update.

Strength and Courage,

Susan

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

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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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laulamb's picture
Replies 6
Last reply 2/16/2017 - 4:31am
Replies by: Anonymous, youngann, laulamb, jennunicorn, UBContributor

No abnormal focal nonphysiologic FDG uptake seen to suggest mestastic disease.

YAY!!  Thanks for everyone's good thoughts and prayers.

There was nothing on the PET scan report that discussed the 4 mm lung nodule.  So I am guessing it was still 4 mm and not able to be seen by the PET Scan or it was gone.  Does anyone have an insight on this? 

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jennunicorn's picture
Replies 12
Last reply 2/15/2017 - 5:52pm

So, my primary care doc had me do some regular blood tests last week, one of which was Vitamin D level. I have been curious since my melanoma madness began over a year ago what my level was, but was one of those things I kept forgetting to ask my onc to test for me.

Well, it's super low at 13. Not really surprised that it is low, but was hoping for a little better of a number. My doc wants me to start on a prescription Vitamin D 2 at 50000 iU. I sent a message to my onc to make sure that will be ok to take while on treatment before I start it. My primary wants me to take it for 2 months then retest me and I guess go from there.

Has anyone else been on a prescription Vit D before? I didn't even know it was a thing until now.

Of course having read (on awesome Celeste's blog) that low Vit D levels in mel patients is associated with poorer outcomes.. I want my levels wayyy up! I guess my orange juice w/ vit D and almond milk w/ vit D just isn't doin it. On top of this my cholesterol tests were a little high.... ugh, can't I just eat cheeseburgers, drink wine, and not exercise without having my cholesterol affected?? No? Dang it! Time to dust off the treadmill..

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

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Cathy M's picture
Replies 22
Last reply 2/16/2017 - 4:55am

John Moore       9/12/1960 - 2/4/2017

It is with a heavy (and sometimes angry) heart that I share my husband's passing on the board. After 3+ years of battling Stage IV, his fight is over. He held on to his fighting spirit to the very end. He died with me holding his hand, playing his Eagles World Tour DVD and with me telling him it was ok to go, I would be fine, and how I dearly loved him and the time we had been able to spend together. 

Melanoma is a horrible disease.  I watched it break down his body but never his spirit. I watched it over 3+ years take from me my lifetime companion little by little. But what it can never take from me are my memories. Mountain biking, ATV racing, Jeep exploring, walking our Great Dane, moving cross country because it was my dream to "live in the west".

When diagnosed Stage IV, his goal became to raise awareness. He participated in news interviews. I made awareness packets every year and distributed them at the cancer center where I worked and with friends and neighbors. He was interviewed for a documentary about genomic sequencing that was made into a DVD by the students at Dixie State Univeristy in St. George, Utah.

So...I will continue his fight. I will continue to participate in 5K's. I will continue with my information packets. I will volunteer for skin cancer checks at the dermatologist's office.  Melanoma may have taken the love of my life physically from me but it cannot take his fighting spirit and our determination to educate others about it's silent deadliness. 

 

Cathy

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Hey,

First time posting, although I've been reading the forum for years.

My wife is Stage IV - primary site in thigh, now with multiple brain mets - all of which as have been zapped with SRS.

She had 8 months of PFS with Tafinlar/Mekinist but that's over. Tomorrow she starts Keytruda, and will transition off Taf/Mek.

Our onco is being a bit vague about the efficacy of Keytruda with brain mets, esepcially given the previous Taf/Mek treatment. Same question regarding side effects.

Anyone have experience and/or knowledge?

Thanks,

Steven

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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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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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_Paul_'s picture
Replies 28
Last reply 2/15/2017 - 7:05am

Just a quick update. I just got out of an operation here in Seattle.

I'm in the ICU. The operation was to improve my breathing, which was a success. So now I'm just recuperating and I'll send more when I have some more energy.

To exist is beyond fantastic.

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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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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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Adriana has been having increasing weakness in her arms and legs for several weeks now indicating likely advancement of LMD. This past Friday she started having severe lower back pain wrapping around and down her legs. Originally thought it was a pulled muscle strain from leaning back on the bed awkwardly. Pain progressed until it was unmanageable and excruciating. Palative care directed us to the ER twice (spent 8 hrs first time and then 14+ hrs on the return ER visit 10 hrs later when she was ultimately admitted to the hospital this AM. Lumbar MRI during ER visit indicated buildup of CSF cancer cells around the spinal cord in the entire lumbar area but no solid tumor pinching. Thus the cause of the pain. A series of standard radiation sessions is planned for this area to hopefully improve her pain to a point that it can be managed with oral or other relief available while at home. Additional discussion is ongoing (pending tonight's brain MRI) with a proposal of performing WBRT to treat her (at least 3) solid mets in addition to the cancer in her CSF and Meninges. It is understood that none of this is curative and that the only way to potentially attack all of the cancer in her CSF would be to perform entire cerebral/spinal radiation which has been deemed entirely too toxic and negative risk/benefit by all involved. We inquired if GK on the solid tumors only (leaving the rest alone) if in-fact the number is still only three and relatively small in size might be appropriate as a palliative measure only in order to "buy" a bit more time. Not really looking to grasp at straws with this idea but looking at it as an alternative to WBRT and it's related downsides.  The Oct, 2015 GK  provided an additional 1.25 years. The radiation oncologist offered that this could be entertained although he didn't really seem too keen on it.

In the meantime BRAFi has been halted in order to start radiation as apparently they don't play nice together. One upside she did have one last pembro infusion on Monday which may be of some benefit although the Dr. doesn't feel that it is working and is why that is to be the last. He restarted her on BRAFi that night, had 2 doses before the ER fun began.

Looking for thoughts on WBRT from those that have experienced its downsides vs upside. Our understanding that on the benefit side, it hopefully will provide some improvement or at least arrest the decline in  issues with her cranial nerves and pain relief. We will also be keeping in mind that the reality is that she likely has a very limited time left. 

I have been doing my best on WBRT research on here tonight but your help is appreciated and a decision needs to be made soon. I really hate this learning as you go about all of this stuff but you do what is necessary. I greatly value the considerable knowledge and experience of this group.

I hope to have the love of my life back home soon. I miss her  ;_;     :>((

Rob

Adriana

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