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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Anonymous's picture
Anonymous
Replies 13
Last reply 6/19/2018 - 11:00pm

Hello, Im new here and I was wondering if anyone has worked while going through opdivo treatment, because I will be starting soon and would love to get back to work. I just finished 33 treatments of radiation so Im home at the moment. I will be doing every two weeks for a year.  The Dr told me to wait atleast a month to see how I feel and Im praying I can go back after that 1 month. 

Thank you 

Amanda

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Riven's picture
Replies 11
Last reply 6/19/2018 - 12:44pm

This whole journey has been happeneing rather quickly. My first appointment with my dermotoligst was May 14th, the removal of the primary was June 1st, and still with stitches in my back, I will be going to my first MRI and PET scans on Wednesday June 20th.

Im pretty nervous. I'm nervous that I might mess up the diet, and they wont beable to do the scan. I'm nervous that sitting in that room for 2+ hours will get to me. I don't know what to expect.

So I guess I'm just asking for any advice from the community for this newbie.

Thanks for any help in advance.

-Riven

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ksbadger13's picture
Replies 1
Last reply 6/19/2018 - 12:38am
Replies by: Janner

Hi all - 

I went through genetic testing last year and am positive for the mutation in the CDKN2A gene which significantly increases risk for both melanoma and pancreatic cancer. My genetics counselor suggested my husband and I look into IVF with PGD (preimplantation genetic diagnosis) if we decide to have our own kids down the line, to avoid passing my gene on to them. Since there's a 50/50 chance that I would, and having lived through and with the turmoil that is melanoma, now coupled with the nagging concern about pancreatic cancer, this method does sound appealing, though scary and expensive. I'm wondering if anyone on here has tested positive for the gene, and if you've had your own kids, considered IVF, or decided not to have kids. This is such a rare mutation, with not a lot of searchable information or support, so any input would be appreciated! 

Thank you for your time!
Kellie 

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VinceMart's picture
Replies 5
Last reply 6/19/2018 - 12:13pm

Hi all,

I have a MRI tomorrow, last one was 8/2017 and clear.  I am a little nervous since this past year I have had 2 in transits and lung and liver mets.  I am currently on Keytruda and Mek.  I will keep updating in case anyone else is on this combo and please reply if you have any experience with this combo. Hopefully I will have good news!  Best wishes for continued good health to all!

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Anonymous's picture
Replies 2
Last reply 6/18/2018 - 1:51pm
Replies by: ksbadger13, Becky

I have a question would it be better to have my surgeon from ENT surgeon or a melanoma surgeon?? I am getting shuffled from 1 surgeon to next. We waiting time I want this out of me so I can start fighting!! Thanks

Susan Bette Hall

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Susanlee528's picture
Replies 2
Last reply 6/19/2018 - 11:12pm

I don’t  know if I’m being paranoid or if I have a reason to worry, but right on the scar from my WLE, pretty close to my original site, I found what looks to be a bad mole. I can’t see it myself because it’s on my back so I only have a picture to look at. I’m trying to figure out how to post a picture here but I don’t know how. If I figure it out I would appreciate any input I can get. I’m calling the doctor first thing in the morning but in the meantime I’m going to be scared all night! Can this even happen only 4 months after surgery?  Wouldn’t being on Opdivo help?

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Coragirl's picture
Replies 4
Last reply 6/17/2018 - 9:41pm
Replies by: Coragirl, Johnjk04, King

Just wanted to wish all the Dads a relaxing, happy day. I hope you are all enjoying time with your families.

Amie Taylor

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Coach2u's picture
Replies 1
Last reply 6/18/2018 - 11:58am
Replies by: aldrichdesigner

Side effects from lpi/nivo kicked in, took 6 weeks but here they are. The same ones several of you guys have experienced.  I have been given steroids and Imodium to help but it’s still awful. I have  two more infusions, do the  symptoms stabilize or settle down ? How did you tolerate this, could use some advice. MIke K.

stage 4 spine and liver tumors. 

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2Kathy's picture
Replies 5
Last reply 6/19/2018 - 10:22pm

My first infusion of ipi/nivo was 9 days ago. On Tuesday, I started with fever/chills/neck pain. Neck pain subsided after 3 days but the fever/chills remain and I am managing with Tylenol and lots of liquids. The past 3 nights however, I have had crazy night sweats, which is something I haven’t experienced ever in my life. Nightclothes soaked. And waking up multiple times per night.

anyone else on this combo who experienced this side effect and if so, was it around for long? Aside from it contributing to the fatigue, I am concerned that it could indicate I’m having some negative impact on my thyroid from the treatment.

Thank you.

 

 

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Hello All,

I don’t usually post, so for my background, I was diagnosed April/May 2015. Nodular melanoma 4.5mm, top of left calf. Sentinel Lymph Node Biopsy positive at microscopic sub-capsular level and a staging of 3B. No additional treatment, doing watch-and-wait and have been NED for 3 years.

During the last month I was diagnosed with seminoma testicular cancer and had a “radical inguinal orchiectomy” to whip it out. Prognosis is very survivable and recent CT scan is clear of progression (actually scheduled for my melanoma follow-up). Part of the post-operative treatment for seminoma can be a few doses of targeted radiotherapy (relatively low dose), to reduce the risk of recurrence.

My question is: should I be concerned that the radiotherapy will hit my immune system and therefore increase the risk of a melanoma recurrence? Melanoma remains my most dangerous enemy. Watch-and-wait is also a valid option after seminoma but can depend on the characteristics of the tumour and I didn’t have that meeting with the doctors yet.

Thanks.
Mark.

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Kalamazooan's picture
Replies 6
Last reply 6/19/2018 - 11:19pm

Hello, I am new to the community.  I am writing because today I noticed a small mole on my thigh, circular, about the size of a pencil tip (one mm).  I think I may have had it before, but today it seemed to be a darker brown.  (I am fair-skinned, and all of my other moles tend to be light brown.)  Tonight I looked at it under a magnifying glass, and it seems to contain two tiny black dots, like blackheads or pin pricks.  That would account for its somewhat darker color. 

Does this sound like something I should be concerned about?

I'm seeing my primary care physician in two days on another matter, and I'm wondering if I should ask him to take it off and biopsy it, or whether instead I should make an appointment with one of the physician's assistants at the dermatology clinic I go to and have her do the excision.  Or does it make a difference whether a PCP or a dermatological PA does it, in terms of competency?  It might be several weeks before I can get an appointment with the physician's assistant.  Also, should I have a punch biopsy or have it sliced off?

Also, I'm assuming since it's so small, I'm probably in good shape, even if the biopsy should come back positive?  

Thanks for any feedback you can provide.   

Ben

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MDUNKLE's picture
Replies 11
Last reply 6/16/2018 - 8:20pm

Hello - I'm Michelle, my husband Tom was diagnosed with Stage 4 metastatic melanoma last Thursday, 6/7.

We are going to the James Cancer Center in Columbus, OH, his oncologist is Dr. Claire Verschraegen. Has anyone heard of Dr. V or been treated at the James?

Tom's melanoma started with a mole on his back, 4mm+ depth, removed last month along with lymph nodes. One of the 8 nodes showed positive for melanoma. PET Scan on 6/7 shows tumors in his pelvic area, hip bones and back and full in his liver, there is also a spot on his lung.  MRI shows a small 3mm lesion being reviewed for melanoma but initial is it is not in the brain. We are still awaiting BRAF results. Initial treatment discussion has been immunotherapy and BRAF treatment if applicable.

We haven't gotten a second opinion - should we? and if so where? Who?

What questions should we be asking right now?

We are trying to move past shocked and denial stages to take action. We have changed his diet from total processed and fast food to a low-fat/sugar, fresh veggies and fruits, no red meat, seafood (he doesn't love chicken), lots of garlic and stopped drinking all of those awful drinks (redbull, monster, gatorade, etc). Also starting to exercise.

He is feeling some pain in his back, any suggestions? Dr. prescribed vicoden, I would prefer a more natural pain relief.

Thank you,

Michelle

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steph4746's picture
Replies 5
Last reply 6/16/2018 - 8:52pm

Hi all, 

I had my first CT scan after finishing four rounds of ipi/nivo so I thought I did share my results  No detectable signs of melanoma!  I could not be more thrilled  The small met near my original groin lymph node site was gone (This is the location that appeared when the Taf/Mek began to fail) and the possible 3mm met (unclear because of lung scaring from loads of pulmonary embolisms last year) was gone too  

 

My team is thrilled with my response and I will soon be back to treatment in a couple of weeks  I have had to take a small pause because I developed Hypophysitis after my fourth round  Additionally, I am now deleoping vitiligo of my skin and nails  My fingernails have grown in white and are sunken at the beds  Has anyone had crazy nail stuff happen with ipi?  I fear they may all fall off  

 

 

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2Kathy's picture
Replies 18
Last reply 6/18/2018 - 9:23am

Me: Stage iv, large lymph node tumor, a few small ones, LDH normal. Diagnosed 5/22.

I’m a week out from my first infusion of Yervoy +Opdivo. I’m feeling overwhelmed, among many other things. I slept most of the day after my treatment, was little less fatigued the next day, but had neck pain and fever Mon-Weds, which has lessened tonight.

I read this board and participate in another online support group, and have learned a lot and gotten much-needed support from the only people who can understand what I’m going through. But...

I feel so utterly uneducated when I read other people’s posts. The acronyms and knowing every bit of data of all your lab tests and basically being walking encyclopedias about melanoma...it’s so daunting to figure out how and if I can become that knowledgeable. A lot of what is said here, it’s just Greek to me. And I’m the type who likes to ask questions and learn stuff, but trust me, I didn’t have the smarts to go to medical school and it feels like I need to basically become one now.

Anyone with a stage 3/4 diagnosis who was already suffering from depression? I’ve been on medication for depression and anxiety for many years and I’m definitely not saying it’s harder on me to have this diagnosis than it is for others but I am concerned that my depression has reached extreme lows that I had never experienced a few times since this started. My cancer center offers psychological counseling specifically for cancer patients and I’m going to try and get a referral so it’s covered.

The emotional and psychological toll this is taking on me is profound. And I don’t see other people saying that in online support groups. I see a lot of people sharing about the medical challenges, but it’s not common to see people talk about feeling sad, scared, depressed, etc. Makes me feel kind of alone. Going to a melanoma support group in a few weeks and I hope that will help me, the nurse who runs it is wonderful, so compassionate.

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Tracyyy's picture
Replies 5
Last reply 6/18/2018 - 3:23pm

Hi, warriors, wanted to share some good news with you. This morning mum had first CT scan after staring Taf/ Mek in a trial for Stage 3 C unresectable in the end of March and we just got the results - the oncologist told us that the results are great and the pelvic nodes decreased in size! I am so happy, this is the best news we got since November 2017. On our way to NED! Honestly I expected the nodes to disspear knowing that target therapy acts fast, but we will take one step at a time and pray that the drugs are our miracle.

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