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 1
Last reply 7/26/2017 - 5:47pm
Replies by: AZSoCal

Hello Everyone,

First off, I just want to say that my deepest thoughts, prayers and condolences, are with everyone fighthing this horrible disease. I feel bad for posting my maybe good news on this forum because everyone else is going through so mucj, but I am not sure where else to go for some advice in this subject. About 7 months ago, I was diagnosed with Stage 1a melanoma at a depth of 0.23mm with regression present (Did not specify how much) and no mitotic activity (0 mitosis per square). It did not contain any other worrisome factors such as ulceration, lymphocytic inflatration, etc. so in that sense it was a low risk lesion. Even though it is a low risk lesion, I was having trouble psychologically dealing with this and moving past it. I would constatntly think about this returning and coming back, and it has been on my mind daily sense my diagnosis. When I did receive my diagnosis I asked if we could send the slides to another pathologist for a second opinion to hear their thoughts and just confirm the original one. The pathologist that the slide got sent to has specialized in second opinions on melanoma for around 20 years now, and he has over 30 years of experience researching and dealing with melanoma, and is considered one of the experts in his field. Anyhow, my lab group ended up sending the slides to him and he took a second look and just recently about one week ago changed my original Stage 1a Melanoma to a severly aytpical melanocytic hyperplasia. I have already had the WLE done on my original site and all margins were clear with no problems at all. I do realize that my original legion was not extremely high risk, but just the fact that their was that risk messed with me psychologically pretty bad, and it was affecting my day to day life. When I got the second opinion back from the other doctor, I really just could not believe it and still cannot. I mean to have this actually not have been cancer would mean so much to me mentally and I am not sure what I should do at this point. Should I take the second opinion and be overjoyed with the good news? Do you think I should get a third opinion, what is everyones thoughts. Thank you everyone for taking the time to read this post, and again, my thoughts and prayers with everyone going through such hard times at the moment.

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Andrea in Nashville's picture
Replies 1
Last reply 7/26/2017 - 5:42pm
Replies by: AZSoCal

Hi guys,

First time posting but I've been lurking since I was diagnosed in April. Just wanted to share some good news. I was slated to start Ipi on Friday. My oncologist saw the press release about the ipi/nivo adjuvant study and asked my insurance if they would cover the nivo, and they said YES! I can't beleive it and I hope this can help some of you stay away from ipi if possible. 

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Anonymous's picture
Replies 1
Last reply 7/26/2017 - 11:21pm
Replies by: CindyJ

My husband was recently diagnosed with stage IV melanoma which has spread to his lymph nodes.  So far he has felt just fine (physically), and treatment will start next week.   However, the day after an MRI (with compound) two weeks ago, his arm where the IV was became extremely sore as did the areas where the tumors are near his armpit, chest and neck.  His forearm was red and swollen.  This lasted about 3 days and slowly subsided.  I googled and read about extravasation which is a problem that occurs when contrast leaks into the tissue around the vein with the IV was placed.  An article I was reading said it was rare but it happens, and it described his exact symptoms.  We assumed that’s what had happened.   Than late last week he had a CT scan and it happened again.  He was in agonizing pain all weekend.  Saturday you could tell through his shirt that his peck muscle on that side was swollen.  Sunday that was gone but there was swelling around his neck and shoulder.  Today he is starting to feel better.  He just thinks it’s the cancer; the tumors starting to cause pain.  I think it’s pretty odd that it happened each time after those two tests.  However, I researched and was unable to come up with any information that MRI’s or CT scans caused this kind of discomfort, and I know the same compound is not used in both tests.   I’ll ask his Dr. at our next visit, but meanwhile I’m just wondering if anyone else has experienced this. I know we have more serious things to worry about down the road, but I am just wondering if all this pain is from the cancer or from the test.

Thank you

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Casitas1's picture
Replies 8
Last reply 7/27/2017 - 6:56pm

Well, after a long day... An hour and a half drive, (luckily along PCH ) three hours of scans, needles, blood and waiting. You all now the routine! My Oncologist ( Rock Star) after what sounded like an ear full from a not so happy patient next door(These Drs. have highs and lows just as we do) came in and told us your scans are perfect! You are still NED!  Ned and i have been hanging out for a year now and have been off Pd-1 Pembro after jumping ship due to side effects 8 Months ago... Thank you all for loads of support and tons of the best info around!

Best wishes to everyone, Paul

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2017 - 11:31pm
Replies by: Kootenay Kid

My husband sees the general surgeon tomorrow to check out the odd spot on his thigh.  Meanwhile, the spot on my inner lip has grown slightly and is darker, but I don't see the dermatologist for a few more weeks.  I keep thinking she will just refer me back to the surgeon.  Also, in my eye exam last week, the doc told me I had a new "freckle" in one eye.  Now I am worried that that could become melanoma.  I am almost 64 with fair skin and a history of avoiding the sun despite some sunburns as a child.  My friends tell me the new-ish spots on my face are just age marks and I shouldn't worry, but of course since my arm melanoma last year, I am worried about every little change and new mark.  I'm tempted to go with my husband tomorrow (he's seeing the same surgeon who did my WLE and SNB last year) and show him my lip, but that would be so inappropriate.  The heck with hisleg--what about my lip?  Great spousal support, right?  This condition can sure make a girl crazy!

 

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dawn dion's picture
Replies 12
Last reply 7/26/2017 - 12:10pm

Hello all. I have been part of this community for nearly 7 yrs. I was diagnosed in June 2010..seems like a lifetime ago. Several months back I came here looking for advise as to what my next step with Keytruda should be. Had been on it for a yr and a half, same spot, the entire 7 yrs, next to my aorta just wouldn't go away. Some of you suggested radiation with the Keytruda. I went back to my Dr. and fought for it. 5 days a week for 6 weeks I drove 2 hours to Moffitt for a 3 min procedure. In April it as smaller but still there. July 6th I went back for more scans and the words I have been waiting for years to hear where finally said..No Evidence of diesease. I have imagined that conversation so many times over the yrs, never once did I think it would be so emotional. Even mow I am tearing up. It has been such a crazy journey but I want people to know that while I know not everyone's outcome is the same as mine, never give up the fight. They have done so many amazing things with this diesease and continue to do more every day. I can't believe I am finally NED, I will be doing a happy dance for a very along time.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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QuietPoet's picture
Replies 4
Last reply 7/26/2017 - 5:22pm
Replies by: QuietPoet, Jamie1960

Hello all,

Thanks for allowing a person who feels like they have cancer but "not quite" join the group! I appreciate your feedback even though I'm not going through the difficulties that many of you are. 

I have a stage 1A (.3 mm) that's been biopsied and will have a wide excision in the 31st on my upper thigh. At the same time, I'll have a biopsy of a changed mole on my ankle.

I have two questions: 1) If melanoma cells show up in the margins of the wide excision, what does that mean? What happens next?  2) How much pain/difficulty did you find in recovering from a wide excision on your thigh and/or a biopsy on your ankle?

The biopsy on my thigh became infected somehow and it's been more painful than I thought it would be (there seems to be a very sensitive nerve near there) and it's really interfered with my ability to get excercise. I'm very worries how the wide excision will feel along with the ankle biospy (inside ankle) given that's a place that moves A LOT.

I'd appreciate any feedback from people who have had biopsies and/or wide excisions on their upper thighs and ankles. I have already read what's on the side related to ankles, but those mostly involved skin grafts. Fortunately, this should not, nor should it involve any lymph removal.

Thanks so much!

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/9/2017 - 12:19pm
Replies by: Hukill

In March of this year I was diagnosed with melanoma on the scalp. On May 5th I had the WLE and sentinel lode biopsy with scalp relocation(basically pulled my scalp as tight as it could possibly go to cover the incision rather than a skin graft) despite being a 3.56 breslow depth with ulceration I was very fortunate to have no cancer in the lymph nodes! It has been a long recovery and my oncologist and plastic surgeon tells me that the pain I am continuing to have on my head is completely normal and can last up to a year post surgery, I am wondering if anyone else has experienced this? At times it is very sharp. Despite opting for the scalp relocation to avoid having a bald spot, I have an area where the hair follicles didn't make it (which means bald spot anyways haha) and where the melanoma was is also sunken in a bit. My husband tells me that it has been since the surgery but I feel as it wasn't and is gradually sinking in more (it was on the very back part of my left crown) Not sure if I am making a mountain out of a molehill, while I am super blessed to have had such a great outcome I know I need to stay vigilant to catch any new things that pop up. Thanks in advance!

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In March of this year I was diagnosed with melanoma on the scalp. On May 5th I had the WLE and sentinel lode biopsy with scalp relocation(basically pulled my scalp as tight as it could possibly go to cover the incision rather than a skin graft) despite being a 3.56 breslow depth with ulceration I was very fortunate to have no cancer in the lymph nodes! It has been a long recovery and my oncologist and plastic surgeon tells me that the pain I am continuing to have on my head is completely normal and can last up to a year post surgery, I am wondering if anyone else has experienced this? At times it is very sharp. Despite opting for the scalp relocation to avoid having a bald spot, I have an area where the hair follicles didn't make it (which means bald spot anyways haha) and where the melanoma was is also sunken in a bit. My husband tells me that it has been since the surgery but I feel as it wasn't and is gradually sinking in more (it was on the very back part of my left crown) Not sure if I am making a mountain out of a molehill, while I am super blessed to have had such a great outcome I know I need to stay vigilant to catch any new things that pop up. Thanks in advance!

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/27/2017 - 11:41am

I will be starting immunotherapy treatments next week.   Nivo.   Naturally my Dr. discussed side effects with me but here's what I didn't ask.  As far as nausea, rashes, fever, etc., are concerned, for the most part...is it typically something that starts right after treatment and then gradually subsides until your next treatment or is it something that stays with you.  I know everyone is different and experiences different side effects, but I would like to hear about your experiences.  If I do have some or all of the side effects I would like to know if it will remain an issue or if I might start feeling better after a few days or a week.  Also, does it get any better after additional treatments or stay the same.  In other words can you build a tolerance the side effects once your body is more used to the drug.  From what I'm reading it sounds like that's unfortunately not the case; as some people mentioned having to stop a particular treatment because of side effects.  

Thanks everyone, and as always hoping and praying for the best for all of you!

 

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Replies by: Sharon93065, KAF, Anonymous, mrsaxde, JaiLee, jennunicorn

Hello
My name is Becky. I was diagnosed last Oct as 1a....... had surgery to move spot on my back. But my dr suggested to have a lymph node mapped and tested at the time. Thats were the second melonma was found in my left axillary lymph node. So that upped the aunty.
Now, I'm cancer free and doing yervoy infusion treatments. I've had 2 treatments and the only side effect I have noticed is the infernal itching.
If anyone could give me some advice. I'm losing a lot of sleep

Thank uou

Rebecca Thomson

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TinaW's picture
Replies 8
Last reply 7/24/2017 - 5:25pm

I'm new to this forum, looking for a glimpse of hope. I was initially diagnosed with stage 4a melanoma which had spread to my lymph nodes in 2008. I had surgery to remove the tumor and all the lymph nodes under my left arm. One year of interferon treatment and I have been cancer free since, until my yearly Ct scan last week. I have access to my test results via an app on my phone, and it said that I have a cluster of nodules in the posterior left mid lung at 6mm, and a 2mm nodule in the lower left lobe. I was hoping for a little info so I could be prepared for the news from my doctor. I'm scared and I don't know what to think.

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Nemesis's picture
Replies 5
Last reply 7/23/2017 - 11:32pm
Replies by: Anonymous, Nemesis, Newmanbell, J.bun

 Hi all!

 

I had my surgery last December, and I have noticed bumps on the scar recently. One in particular is pretty big. My scar is in a hard to reach spot, so I don't touch it too often. And I cannot remembe if they were there!!!

 

My next appointment is in 6 weeks. Should I call and as for an earlier visit?

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/22/2017 - 6:12pm
Replies by: Christine.P, Anonymous

3/4 Bottle Tafinlar to someone whom needs it even as a back-up. Can't watch it got to waste.

Adriana

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brendon's picture
Replies 10
Last reply 7/24/2017 - 3:42pm

I am researching places to go in the US for second opinions and what clinical trials I should consider and wondered if you kind, knowledgeable people might be able to assist.

The context is that I am stage 4, had 3 doses of ipi/nivo before stopping due to colitis. Initial response was good with 50% reduction of tumors. But after a couple of months of steroids/immune suppression, there has been some new tumor growth. 

One option is to start PD-1 (pembro) but given I have not had durable response from initial treatment, my oncologist is wondering if a clinical trial might be a better option. Any views on trials I might consider?

I am also looking at somewhere to go for second opinion. Considering places like Memorial-Sloan, Dana Farber, and MD Anderson. Any thoughts and or other suggestions? I live in Seattle but willing to travel anywhere.

Thanks so much 


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