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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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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_Paul_'s picture
Replies 18
Last reply 2/10/2017 - 6:58pm

Wow, where to start. My cancer continues to grow and spread. I am in Seattle, back at the hospital. It was simply getting too hard to do the most basic of things back home. I have a surgery planned tomorrow to place a stent in one if my kidneys. It can't drain urine because it is blocked by a tumor.  I have gained about 20 pounds in water and I am bloated from my toes to my midriff. This big tumor in my lower right lobe is squeezing a large part of the lung shut, which is developing bronchitis-like symptoms, I.e a wet cough.

I will fly back to LA where I have a room waiting in Palliative Care.

The plan is to consent the trial on Thursday and receive my first infusion the following Wednesday. It feels like a race. I just need to survive long enough to see if this new treatment can turn things around. I have put up the best fight I know how. I have so much to live for, not to mention the awesome story I would have, but I am just going to do my best and hope for the best.

- Paul

To exist is beyond fantastic.

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Bubbles's picture
Replies 10
Last reply 2/10/2017 - 2:55pm

Been thinking of you every day!  Hope you have gotten your stent and are feeling a bit better in that regard. Fingers crossed for your getting to sign on to your trial tomorrow.  Big hugs to you and yours!  love, c 

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Anonymous's picture
Replies 7
Last reply 2/10/2017 - 2:46pm
Replies by: Sheepsandcows, MaPerny, Anonymous, _Paul_, David McCaw

Melanoma stage 4 with metastasis in lungs and spine

BRAF mutation

Not responder to IPI (Yervoy)  PD-1 Inhibitor (had to be suspended) and BRAF/Mekinist combo. Waiting to be approved for a new trial Atezolizumab and MTIG7192A

Residence: Canada

Thank you!

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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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newmanmark's picture
Replies 10
Last reply 2/9/2017 - 9:33pm

Hello,

I have been a stage 4 patient since 2012.  In December 2016 I started on the IPI/Nivo combination and made it through 3 rounds.  I am due for my 4th round next week.  However, this week I developed a headache that persisted for 5 long days.  Yesterday I had bloodwork done and an MRI.  They confirmed that the pituitary gland is swollen.  The oncologist and endocrinologist agreed that it is worth a shot to save the pituitary with high doses of prednisone that will be tapered down every 5 days.  In the meantime I will not be receiving treatment.  

The likelihood of getting the 4th infusion if Ipi is small as they believe it will only damage the pituitary further.  The good news is that I should still be able to continue on the Nivolumab.  I haven't had a CT scan yet to determine the response to treatment.  Hopefully the tumour in my pancreas has responded.

I was wondering if anyone else has a similar response to this treatment and were you able to continue on with Nivolumab?

Thanks
Mark

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Kristenp's picture
Replies 6
Last reply 2/9/2017 - 6:47pm
Replies by: jennunicorn, Kristenp

My doctor did a shave biopsy of the top of my  right ear and it turned out to be melanoma.  She referred me to a dermatologist in Philadelphia to have it removed (I go Monday) and she sent me for blood work and a chest X-ray.  She didn't talk at all about seeing an oncologist, and I was so shocked by the diagnosis that I didn't question her.  I'm waiting until morning to call the office and ask some questions.  In the meantime, maybe someone here can help me out.  The pathology says the Breslow is at least 1.1, there are 4 mitosis/mm2, it has nevoid features, and is at least a T2A.  I'm completely freaked out, and the more I google things the more upset I get.

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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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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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