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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Totally Blessed's picture
Replies 2
Last reply 2/3/2016 - 12:30am
Replies by: ldub, Totally Blessed

My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

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mybelle's picture
Replies 16
Last reply 2/2/2016 - 7:22pm

Looking for some feedback from other stage IIIA patients who are making the decision to watch and wait or try yervoy. Son diagnosed with IIIA, 1.1mm on right arm, micro one node, 23 other nodes negative. He is leaning more toward boosting his immune system naturally through healthy living due to the side effects of yervoy. Appreciate hearing from other patients in a similar situation.

mybelle

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Nanners10's picture
Replies 3
Last reply 2/2/2016 - 7:02pm
Replies by: WithinMySkin, Anonymous, Nanners10

Hi all,

Just looking for any advice that anyone can give. I had a CT scan (was experiencing some chest pain) and the results were so obscure. My dr. wants to follow up with a pet scan or another CT scan in a couple of months to see the difference. He didn't really go into details as to what causes (other than melanoma) these items and I was wondering if anyone has run into these before and if they turned out to be something or nothing. I know that maybe I am not giving enough info but don't have a copy of my scan yet but am stressing out. The terminology in question is:

-thickening of the pleural wall on the right side 

-abdominal stranding between the liver and the kidney

I haven't ever even heard of abdominal stranding and don't know how or what it relates to. Can't seem to find much on a google search either.

They are both listed as incidental findings as the scan did not include the whole abdominal/pelvic area it was mainly a scan on the lungs.

Any thoughts would be greatly appreciated. I know that another test is the only definitive way to determine what's going on but we all spend enough time obsessing over our reports that I thought this would be worth a try.

Thanks,

Nancy

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My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

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Anonymous's picture
Anonymous
Replies 11
Last reply 2/2/2016 - 4:14am
Replies by: Scooby123, melj, gcooperbl

After reading posts for a few months and finding many helpful, I thought I should contribute, hence the post. I'm a Brit living in the UK, my first melanoma was in 1995. A year later, following a resection of lymph node mets in my groin I joined a trial of Cancervax at JWCI in Santa Monica. Although overall the trial was unsuccessful, it seemed to work for me. I was NED for 18 years before presenting in December 2014 with two new primaries and a local recurrence on my flank. During 2015 I had 7 subcutaneous mets excised at the Royal Marsden Hospial in London. My CT scan earlier this month showed progression to lymph nodes in my neck and chest as well as a couple more subcutaneous mets. On January 20th I started on Keytruda. The first week I had negligible side effects but the last few days I've had headaches, fatigue and night sweats. All manageable. I had the option of Yervoy and Opdivo but chose Keytruda because I have a low tumour burden and normal ldh. The more severe side effects of ipi put me off the combo therapy but if I don't respond to Keytruda that could be the next step. 

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ashleyc's picture
Replies 5
Last reply 2/1/2016 - 3:47pm
Replies by: mary1233, ashleyc, Kim K

Father has mucosal melanoma. Had a recurrence after four years from diagnosis. It was removed surgically and now our options are watch and wait or choosing chemo with interferon or Cisplatin and Temozolomide. Anyone else been faced with this decision have any advice? I did ask about ipi but was told there was only one study using it as adjuvant therapy, the dose seemed too high and risky, and it was for those in stage III with a positive lymph node. So oncologist made it sound like it wasn't an option. Thank you to all in advance. 

ashley chavez

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grahamtosh's picture
Replies 10
Last reply 2/1/2016 - 2:48am
Replies by: Anonymous, grahamtosh, Janner

Hi  All

 

i have a history of 2 melanoma on my legs - December 2014 excised . 

Yesterday my dermatologist removed 17 suspicious looking Nevi after looking at them with Mole Mate . I have been told by lots of people that this is not common practice ? when questioned , My dermatologist refers to a ' film' that masks her seeing melanoma clearly on my body that is why she just excises all  . Does anyone know about this type of 'film ' pls , what is the medical term / explanation . 

 

 . I got second opinion ,they said remove only 5 out of the 17. He said he only excises what looks worrying to the naked eye , he said suspected melanoma are very obvious and you see them with the naked eye / dermis cope very easily ! I then went back to original Dermo who wants to remove the 17 and asked her to explain. 

she said all 17 showed ABCD but not E.  With smudgy outlines . She said she finds my skin very difficult to read as there is a ' film ' which hinders masks seeing the melanoma , so she suspects them all ??? Is that possible . Does anyone have any medical terminology reference of this ? ? 

 

She has scared me sufficiently so I then went ahead and she removed all 17 yesterday wide excision and I am now awaiting biopsy results . 

 

thabks very much 

 

 

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ecc26's picture
Replies 16
Last reply 1/31/2016 - 9:42pm

I know I've been absent from this board for a long time, but I find myself apparently failing the Merk PD-1 I started a year and a half or so ago. I won't go into a lot of details about my past as you can find my other posts on here by doing a search

I had 2 masses in my chest that I underwent radiation for in the fall and those look great at this point, but I also had 5 new brain mets (that turned into 14 by the time I got up to the center for gamma knife). I've got an enlarged lymph node in my neck and after yesterday's scan results apparently a new tumor in my spleen and one near the cranial pole of one of my adrenal glands. Since they treated 14 with gamma knife instead of 5, my medical oncologist is reserving judgement on that until the scans get up to that doctor, but there were still a whole bunch on the MRI. Hopefullly I'll have an answer about which were treated and (hopefully) responding. 

I've been fighting off my oncologist's suggestion that I switch to the PD-1/Ipi combo because I remember well how I felt on Ipi and I've had no side effects on on the PD-1 over the last year and a half. I should also note that if not for the scans, the only tumor I'd have known about is the lymph node in my neck- for which I was hoping to possibly use the recently approved Herpes vectored vaccine (since it needs to be injected directly into the tumor). But I think I've run out of time to stave off changing therapies, especially if the MRI shows no improvement or worsening. I've been spending time today looking for trials and other possibilities. 

The other possibility my oncologist mentioned was a vaccine trial happening in Buffalo, NY, but he didn't seem to be that excited about it- probably because the melanoma specialist I used to see up there has moved out of the area and is no longer there, but also because vaccines in the past have not really panned out very well. I'm not sure he has as much faith in the the department that's there now, and he did call my former specialist to get his opinion- who suggested the combo therapy. He has also contacted Dana Farber (Boston, MA) and they have not implemented that for their patients, despite having run trials for it at their hospital. 

Does anyone on here have any other suggestions? I'm on a bit of a time crunch to get it figured out as he'll be looking for an answer likely tomorrow evening after I see the radiation oncologist. I'm not critical (yet) but know myself well enough to know not to hold off too long. I don't want to give up the no side-effects if I don't have to, but I don't want to waste time on a vaccine trial either. I know there's no way to tell if it will work or not, but I have no idea (I'll be reading about it this afternoon) what is involved with the trial or if I'd even qualify for it. Any help/suggestions would be greatly appreciated

 

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MaryD's picture
Replies 2
Last reply 1/31/2016 - 4:59pm
Replies by: Bubbles, Jubes

I am fortunate to be long term Stage IV survivor (7 years since last recurrence) and over a period of 8 years, did multiple treatments (INF, vaccine trial, Ipi, pulsed IL-2).

While I'm certainly not getting any younger (61), I've really noticed more joint pain and osteoarthritis in my feet and hands.    A lot of this seemed to come on  after the pulsed IL-2 treatment but it may well be the result of cumulative treatments over time.  

I was wondering if anyone else has experienced this after doing multiple immunotherapy treatments.  

Thank you,

Mary

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grahamtosh's picture
Replies 10
Last reply 1/31/2016 - 12:50am
Replies by: grahamtosh, Janner, Anonymous, WithinMySkin

Hi 

hope there's a qualified person that can very kindly advise 

I had 2 melanomas removed last year. So now am wary  and listen to the doc but not too sure  . I have a back covered in what look like atypical Nevi. Dermo has done mole mapping and says she wants to excise  17 atypical moles with margins , from my back . ( they will of course then go for biopsy ). Mainly due to diameter but some smaller ones also due to my age 46 . 

Do I need all 17 excised ? Is this a worthwhile precaution ?

thanks for your advice .

 

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gcooperbl's picture
Replies 6
Last reply 1/30/2016 - 5:56pm

my dad has stage 4 melanoma in brain lungs and liver......he has been offered pembro but only one dose? we cant understand why as it is supposed to take 3-4 doses min? 

he is braf negative 

his cancer in liver is getting worse and needs treated asap, he is due to start pembro next week, and he is on steroids though coming off them.

any advice? he needs the best treatment? any other drugs out there that could help? or any more tests we could do?

 

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jamieth29's picture
Replies 24
Last reply 1/30/2016 - 2:10pm

Just got done at my local oncologist visit and found out they approved it for me. I was very surprised just wanted to let people know some doctors and Insurance may let people get it. I still have some hurdles to get through the first big step is pet/ct and MRI next Thursday. I asked my doctor how long we would go for and his opinion was 6 months or a year. I'm still unsure about my decision and am not going try and not Look past scans on Thursday hopefully the come out clear. I tried getting Nivo through a trial before but relapsed locally before trial started. So I am basically getting trial at home. Everything in 3c N.E.D is kind of a unknown as far as side effects and such but leaning heavy on going for it. I have read info on the trial that Celest went through a couple times so there is some data. Any thoughts or questions?

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Replies by: mamatupou, Anonymous

Hey all, it has been a long time:) Happy to be 6 years away from diagnosis!

So, went to derm and had some biopsies done. OF course I have some basal cell stuff. I feel like I will have my whole face redone 1 inch at a time. However, the other biopsy was on my right leg.

This poor leg has had two surgeries, one to remove the original tumor and one to remove my lymph nodes (RLND). This new pathology shows a "compound nevus ( associated architectural disorder and severe cytologic atypia)

So here is where I need advice. The derm wants to do a wide excision. My concern is the complications that come with surgery on this leg. Is it severe enough to take my chances, or is it so unlikely to become melanoma that I don't do the surgery and take my chances?

I would love to hear straight forward answers. pro/cons, the good the bad and the ugly.

I have 4 kids under 13 and need to make smart health decisions. I try to make educated conservative decisions, but I feel like I am making decisions on 5 yr old information.

thanks ahead of time

sarah

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LoveLife's picture
Replies 8
Last reply 1/29/2016 - 8:12pm
Replies by: Cynlee, LoveLife, Janner, Anonymous

I wanted to share my story since I am going in for a biopsy for an atypical mole on my foot. It will then be sent to a pathologist and it's irregular, discolored and with black dots. For those of you with short attention spans, I'll ask my question now before I share. I am having a wide exision biopsy on my foot? How long was your recovery? What was the procedure like?

Now that my question is out, I also wanted to share my story because I'm scared and I've already learned so much from reading this Bulliten Board. Today is the day I audition for a dance company that I've been training several months for. I'm 30 and even though I was overweight and miserable for most of my early schooling, I had a great life change in my 20's and started to salsa dance more intensely. The irony of it all was that I was told I was not the ballet type when I was 5, but Salsa is like ballet with congas!

It took me a long time to feel comfortable in my body. I hadn't seen my doctor in a while. I had a blood clot in my leg that traveled to my lungs (pulmonary embolism) when I was 24 but this is the healthiest I've ever been. I got really sick with a random virus before Christmas and booked a last minute appointment to show my doctor a growth on my pinky toe. It wasn't discolored but she sent me to a podiatrist to have it removed. What I thought to be a superficial visit to the podiatrist became a concerning visit. I actually felt weird going to the doctor for it.

The Podiatrist looked at my toe and then started asking about another mole on my foot. I've had this mole since I was a child. I've had two and while one of them has faded, the other has become more discolored and dark. I made a joke about it and then the Doctor looked at me with a look of concern I couldn't shake off. He asked me if anyone in my family had skin cancer and then took a step back and said, "You need two surgeries and I'd like to do that in my outpatient clinic at Beth Israel Hospital in Boston.

He then asked, "Can I draw on you?" My first reaction was, "Can I audition on Tuesday?" He didn't look amused or say anything about dance. He then drew the shape of an eye-lid on my foot. He explained how that I needed a wide-local excision. At that point, between his concern and urgency, I felt scared. I asked if this is something that could happen on an existing mole and I can't remember what he said. All I heard was, "My staff will call you from the hospital," and there I was sitting in the doctor's room alone. 

I left the office and went for an x-ray. He said that the grow could be an extra bone but also wanted to remove the mole and the skin underneath to have a biopsy. I usually have a delayed emotional reaction to things. I'm really good at responding to a crisis but this visit was different. I called my primary care doctor since I need to get clear for surgery and she said that I'd have to go on medication before the surgery since I've had a pumonary embolism and bed rest is risky for me.

I took a good long look at the mole when I got home. It's irregular, two different colors and I have some black dots on the side. I remember is scabbed the last time I went on vacation. I also have a new one that appeared on the sole of my foot. I'm scared and in what I've read I have a lot of respect for those with Melanoma. I do not have an diagnosis since I am days before my surgery but I kept telling my friends two weeks before this happend that I felt like I needed to start juicing and change my diet to feel more energy. I've been calling the office everyday since the doctor needs to submit his notes in order for me to be scheduled. He hasn't done that since Thursday.

I know it could not nothing, something, or life-changing. Either way, foot surgery at the peak of my dance is really upsetting. I went to rehersal last night and cried the whole way home. I wanted to ask if anyone else has had a wide exision on their foot and if so, how long did your recovery take? I obviously won't be able to place any pressure on it and I walk to and from work.

Any advice would be appreciated and for those actively fighting melanoma, I thank you for sharing your story. It's helped me a lot during this time of uncertaintly. In my gut, something wasn't right about that visit. When I played sports we always had to get to know our opponent to create a strategy. I feel like the more I read, the better I can be prepared but at the same time, I just want to know what's going on with that mole.

Thank you for reading and sharing in advance.

<3

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keepthefaith11's picture
Replies 5
Last reply 1/29/2016 - 6:01pm
Replies by: Anonymous, mybelle, keepthefaith11

Ok, here is another question. At this point, would it greatly benefit him to go to Moffitt in Tampa? Since at this stage the nest step would be Yervoy. I am not seeing many other options except wait and see. Would they do anything differently you think? I just don't want to delay the start of Yervoy waiting for an appointment over there. Any opinions?

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