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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Replies 6
Last reply 2/19/2018 - 8:21pm
Replies by: Anonymous, CHD, cancersnewnormal

I'm hoping someone here might be able to offer an educated guess as to what's going on with my groin. I've asked my oncologist and dermatologist about it, and they both say it's nothing to worry about, but it's pretty terrifying having groin pain on the same side that the melanoma was removed, and not having the doctors give me any real idea at all about what might be causing that pain.

The situation is as follows. I was diagnosed with Stage 1A melanoma last May (2017). The biopsy reported 0.38 thickness, no ulceration, mitotic rate of zero. I was extremely relieved at the time because I knew the biopsy report was about as good I could have hoped for, short of it being melanoma in situ.

The problem I'm having now is that starting about a month or two after the WLE, I've had groin pain (same side as the melanoma) that has been getting progressively worse. It started with barely noticable groin pain that I wasn't even sure was real or just imagined. Over the past six months or so, it's gotten progressively worse to the point where now I feel almost constant tingling on my groin.

There are no palpaple lymph nodes in the area that's bothering me. I went to my oncologist and he felt around the area and told me it's nothing to worry about (but didn't offer any suggestoin as to what might be causing the pain). He said I could have an ultrasound done on the area if I was really concerned, so I did that, and it came back fine. No swollen lymph nodes or anything else they would consider alarming.

I also saw my dermatologist and told him about this and he said it's nothing to worry about. I asked if the WLE itself could be causing my groin pain, and he seemed to nod in agreement to that being a possibility, but he stopped short of actually giving me any personal opinion on why my groin is constantly sore.

My foot on the leg that had the melanoma has been swollen since the WLE, but it's been getting better gradually. A couple of months after the WLE, it was extremely swollen, and now the swelling is barely noticable (but still a bit swollen compared to my other foot). I might be able to comfortably assume that the groin pain is related to the foot swelling, but if the two were related, it seems backwards that the groin tingling would be getting worse as the foot swelling gets better.

So that's where I am today. A constantly tingling groin on the same side as my melanoma/WLE, a clear ultrasound, and no real idea at all about why or whether I should be worried about it.

Login or register to post replies.

jennunicorn's picture
Replies 16
Last reply 1/21/2018 - 5:22pm

Hi everyone!

I have recently been dealing with knee pain at a higher level than usual despite taking glucosamine joint supplements. Other joints are doing fine, but I had some knee pain years before doing any immunotherapy. So, I just had a x-rays done on my knees, showed cartilage loss which was not surprising. But the surprising thing that it also showed was osteopenia.. loss of bone density. Not quite osteoporisis, although I have not had a bone density scan done so I don't know exactly how bad it is yet.

I have been on vitamin D3 1000iU daily for almost a year. I may need to up that dosage.

My question is whether anyone has read or heard about bone density loss as a side effect of immunotherapy? Or if anyone has experienced it (at an age where it would not be common). 

I have my post-surgery scan tomorrow (finally) and will also see my oncologist. Going to bring this up to her as well and see what she thinks. I am going to be 31 on Sunday... but, my body seems to think I'll be 71, sheesh!

 

 

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

Login or register to post replies.

Dasupah14's picture
Replies 4
Last reply 1/17/2018 - 9:59pm
Replies by: casagrayson, Dasupah14, Anonymous

My son of 14 years old had a mole lightening over 3 years ago. It was a normal black mole he'd always had until it turned pink. After turning pink a half started to turn white and in the end the other half turned white. The mole ended up completely white after 4 months of losing its colour. It's passed 3 years and we were not worried. We commented it to his pediatrician the other day and said that changes in hormones can cause this things and that his mole is not suspicious. But I've never heard about regression in a teen. It wasn't a halo Nevus. And his mole now doesn't present characteristics of the ABCDE. Can this things occur in teens? I've heard that changes in moles of teens are very common but a regression?

Login or register to post replies.

JaiLee's picture
Replies 4
Last reply 1/20/2018 - 12:20am

Hi Everyone,
I need to get a hep A vaccine, and was wondering how long after my last ipi infusion can one have vaccinations? Without com[plications? I thought I was told a year, but wondering if anyone else has had to be vaccinated and what their response was.

Thanks!

Login or register to post replies.

dessie's picture
Replies 6
Last reply 1/20/2018 - 6:54am
Replies by: dessie, CancerSpouse, Anonymous, MichelleRHG

Hello,

Im new to all this and was dx on a Friday Jan 5,2018 with a phone call at noon whlie at work with spreading melanoma.  I never expected this dx, it was only Breslow1.4 mm deep with miotic rate 5/mm2  .nonulcerated but bled.

 i am not derm savy but know when i need to send patients to a derm.  I am a nurse practitioner who consoles, refers patients to derm, surgeon, or oncologist as i am in primary care.  I am now on the receiving  end of GETTING any diseases much less melanoma.  Shocked felt totally taken off guard, and totally dumbfounded.  Number one, ,i never give news such as cancer over the phone much less on a Friday afternoon.  I ask patients to come in so they can get as many questions answered referrals made and options provided to them face to face,but this i think is just style not wrong nor right just how each provider approaches the disease state of a patient, but i digress...

Today again i was on the "other end" of going to nuclear medicine for lymphatic mapping and then onto surgery for sentinel biopsy,  So keeping the faith, i awoke with optimism of the outcome.  I was disappointed to discover that he also took the right inguinal nodes. (something he told e he would bx any "lit up or hot nodes")  This of course does not mean that the melanoma had spread ( i tell myself intellectually) but knowing what this could indicate.

My surgeon will call me the results probably Thursday Jan 18 with what i hope is good news.  I am scared but hopeful and finding this forum will be a great sharing experience and inspiration for me.

Thx for all being here....

Dessie

Login or register to post replies.

MichelleRHG's picture
Replies 5
Last reply 1/19/2018 - 12:45pm

Hi, I just had 2 small, moveable subQ masses excised from the back of my hand.The dermatologist said she saw no pigment, which was probably a good sign. They were white, just like the underlying skin. She also said they were not as hard as she initially thought and were very easy to excise. They came out as little round white balls, from what I could see in the specimen jar. Has anybody actually looked at their subQ melanoma when its been taken out? I know the pathologist will give the final word but does this description sound hopeful or not? Worried, of course. Stage 3B, primary on thigh in 2009, Mets to groin and pelvic nodes in 2016. Thanks in advance for any insight.

Login or register to post replies.

Replies by: Treadlightly, BrianP

Hi all,

I was diagnosed with stage IIA melanoma in September 2017. The mole was on my lower left leg - 2.5 mm but not ulcerated. I had a WLE and SLNB at the end of September and happy to say i had clean margins and no lymph node involvement. They told me that my first appointment with the oncologist in follow up would be in January- and it's coming up this week. (I did see my dermatologist in November for a full body check and all looks good.) I'm a 38-year-old mother of three who just had twins two months ago, so while I am exhausted I'm otherwise in good health!

I'm wondering if any of you have guidance or advice for the questions I should ask my oncologist to make sure I am getting the best treatment possible. Also what should I expect from this appointment? Many thanks for your help and advice!

Login or register to post replies.

ThinkingPositive's picture
Replies 1
Last reply 1/15/2018 - 7:10pm
Replies by: Janner

Does anyone have stories to tell about lentigo melanoma? My doctors told me my risks are low for recurrance but I still need to be  vigilant with every 3 month skin checks. I don't have many moles but lots of freckles and the age spots associated with sun damage on my face, hands  and back (I am 61). The research does not answer the question of am I more at risk for the other forms of melanoma. 

Was lentigo maligna melanoma IIA on nose. WLE 10/30/17and graft 11/10/17. 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 1/18/2018 - 1:58pm

Epacadostat; Incyte: 

This drug could be the year’s most-anticipated cancer immunotherapy. Designed as a first-line treatment for metastatic melanoma, it’s used in combination with Merck’s Keytruda. Studies have shown that 56 percent of melanoma patients treated with the combination responded to the therapy for a median 45 weeks, and their cancer didn’t progress for a median 12.4 months. The FDA probably won’t approve the drug until late in the year, given the hurdles still facing Incyte.

Login or register to post replies.

Seashelly's picture
Replies 4
Last reply 1/18/2018 - 12:10am

Hello,

I am currently concerned about a brownish/blackish growth on my 4th right toe. I think I have had it since August 2017, but didn't think too much of it. Kept thinking it would go away or grow out. I was recently at the doctor for an unrelated illness and showed her my toe. She said it "didn't look worrisome" to her, but any atypical markings on the foot immediately needs to be seen and evaluated by a dermatologist. She said it could be a bruise, it could be a mole, it could be blood, or it could be cancer.

I have an appointment in 3 weeks. I am feeling very anxious and worrying if this is actually subungual melanoma. Here are a couple of photos of my toe:

https://m.imgur.com/a/yccER

I don't remember any major trauma or injury to my toe, but that doesn't mean I didn't stub it or drop something on it at some point. I just don't remember. I think that the spot has either grown or moved up - when I initially noticed it last year, I think it was mostly hugging my cuticle and that's one of the reasons I brushed it off. Now I think it is bigger, but I don't know if it is growing out (like a bruise or hematoma) or growing bigger (like a melanoma).

Anyway, I was wondering if anyone has any insight as to what they think this may be on my toe. Again, I am super stressed and anxious and my mind is tumbling out of control. I understand melanoma is deadly and I fear for the future for me and my family.

Thank you very much for your thoughts and time!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 1/15/2018 - 5:59pm
Replies by: lep, Janner, Mckown5254

So I currently do not have Melanoma and never have. I am 18 years old and I am looking for some advice on whether I need to get my mole checked my a doctor, and i figured what better place to ask for an opinion? I have had this mole on my upper arm since I was a toddler. It has never caused any problems, and due to its size (1.2cm) my local doctor told me, when I was  about 10 years old, that I would probably have to get it removed for precautions later in life. Well recently I have noticed the edges blurring a little bit, and it is slightly changing shape (it used to be pretty much a perfect circle). It also has a couple of long black hairs growing out of the center which were never there. It is pale brown in colour and the colour seems pretty even overall.My mother said that there's no difference, but I can see it and have a gut feeling that it's changing. I have very pale skin and although I am very rarely in the sun I have about 50 moles covering my body. I may just be over reacting but I can't get it off my mind! Thank you :)

Login or register to post replies.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 1/16/2018 - 12:46pm

Happened across a Canadian Melanoma site called, "Save Your Skin" started by a woman who was diagnosed at Stage IV in 2003. 

One thing I found interesting is this series of patient stories some fairly new and others long term survivors in their pictures and words ("Melanoma through my Lens").  Reminded me of how I felt while in the thick of the fight and I felt it might be inspirational to others on this board:

https://saveyourskin.ca/melanoma-through-my-lens/ 

Luke 1:37

Login or register to post replies.

CPM0720's picture
Replies 4
Last reply 1/16/2018 - 8:21am

First of all I want to thank those who posted on my last post. My husband has Stage IV melanoma and was on Opdivo/Yervoy. He showed progression and spreading after 12 weeks so he was moved to the Taf/Mek combo. 

We were not sure about everything at first but after reading the CT scan and more discussions with his doctor, we felt this was the correct next step.

with that said, my husband has been on Tafinlar for  about 3 weeks and Mekinist for 2 1/2 (the delay was due to Christmas and the dr wanting him to not have too many side effects for the holiday.) 

He woke up today with what he calls “hazy” vision. His eyes are also red. We called the dr and she wants to hold the meds for a few days until he can see an eye doctor and she is being overly cautious (her words) and scheduling a Brain MRI. (He has not had brain Mets so far.)

i have read a little online and it seems that it is more than likely something that can be treated with possibly steroid drops and maybe lower doses of the meds but wanted to see if anyone had personal experience. It clearly scared and worried us as this combo seems to be really working and we would be super disappointed if he had to go off it completely.. any reply is appreciated 

Login or register to post replies.

Pages