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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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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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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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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youngann's picture
Replies 8
Last reply 2/10/2017 - 1:19pm

My previous scans showed a lesion in the breast - biopsy = negative, 4 nodules on the thyroid - biopsies = negative, and 5 pulmonary lesions.

I had my follow-up CT yesterday and 3 of the pulmonary lesions have resolved, the remaining 2 are unchanged. I'm taking that as very positive news :-)

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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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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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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Bmine102793's picture
Replies 2
Last reply 2/9/2017 - 1:51pm
Replies by: debwray, Anonymous

So fiance got surgery to have a growth on forarm removed and armpit lymphnode removed biopsy came vack positive for melanoma in both abd he was diagnosed stage 3 because of lymph node involvement. Had ct scans and mri done and all was clear and the syrgery actually removed all that was visible on ct scan. As precaution we were reffered to melanoma specialist at clevland clinic for second opinion which we see next week we figured they would prib do opdivo therapy but we just got another call for a same day app wuth a radiation oncologist. So what does that mean? Maybe radiation and not opdivo?

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Hriggenbach's picture
Replies 8
Last reply 2/9/2017 - 3:45pm

Has anyone had there femoral artery cut and repaired during there groin lymph node removal?

Mine was cut and had to be repaired. I spent 5 days in the hospital than 6 days in a nursing home, I was then sent home in a wheelchair with nerve damage from my knee to my ankle and I've lost all feeling in my thigh. I have not been able to start my cancer treatment yet because I have so many  surgical wounds. My dr said my lymph node was attached to my femoral artery and it was nicked so the vascular surgeon removed a 3 inch section and reattached my artery. They are tell me it is somewhat normal I'm in extreme pain and I'm really questioning if this is true? 

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Hi, 

Jennybaum has posted below asking for advice AND a specialist recommendation for her mum as treatment so far has not been as would be expected. Has anybody got personal recommendations please ?

Many Thanks

Deb

 

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