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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karima49's picture
Replies 3
Last reply 2/5/2016 - 9:59am
Replies by: Anonymous, marta010, Scooby123

My mother was diagnosed with Stage 4 in December 2015. She has been on the Mekinist/Tefnlar combo for about a month now. She has had a major problem with nausea and vomitting. She went to DR 2/1/16. She is now to cut dosage in half. Once in morning and once at night instead of twice in morning and twice at night. It seems to be doing a little better but she is still just so weak. She can only do something for about 10 minutes and then she needs to rest. Is anyone else experiencing this and is there anything helping you? She has lost 23 within about 2 months. They want her to eat more to see if that helps get some strength back. Please help with any suggestions. Thank you. 

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Azcaddyman's picture
Replies 4
Last reply 2/5/2016 - 9:56am
Replies by: Anonymous, Azcaddyman, Janner, gregor913

OK here's a quick summary of what's going on

 

I went to my dermatologist to have a large lesion on my neck looked at. Although I was convinced it was melanoma, he insisted I was wrong. He suspected it was a bcc. He did a small shave biopsy. The pathology report showed ssm at least .60mm deep. No mitosis, nothing unusual except regressive changes at the base of the biopsy. I was referred to a surgical oncologist. Because we didn't know the actual depth I was scheduled for a slnb and wle. I went in for my procedure about 3 weeks ago. The lymph node biopsy failed. They couldn't get the radioactive tracer to drain into the lymph system. My surgeon did remove some tissue that showed some pickup of the dye but wasn't sure it was even a lymph node. 

Last week I went in for a post op follow up. The pathology report from the wle/slnb showed that the tissue was not a lymph node. Although it was cancer free. The "residual" melanoma was .8mm deep. No mitosis. Stage 1a. I was told at that point that since my tumor wasn't deep enough no further testing would take place. 

Now OK I understand how this works, you can't add the first biopsy to the final excision to determine depth. So this means my true staging info was lost because my dermatologist didn't do the right thing. However, is this important? At first they wanted to do a slnb but when that failed, is it OK to just say I'm OK? Would I be crazy to ask for an ultrasound study of my lymph nodes? My Dr assures me that the chances of spread are so low that there's no need to be concerned. So should I just relax? I get my stitches out next week. That will probably be my last appointment and after that I'm on my own. 

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Replies by: andie1059, jamieth29

Hi all,

I'm new this forum so I appreciate your support and patience! I just found out that my cousin’s husband has metastatic stage IV melanoma. It’s spread to the superior part of his left lung, but nowhere else. He’s 32, and from what I've seen, he’s an amazing father and overall guy. His wife is currently pregant, complicating things further. 

He is Romanian, as is most of my family. I haven’t lived there for many years and I don’t know the health care system well, but it doesn’t look very promising. According to Romanian law, cancer patients have the right to receive free medication, but drugs are very hard to find. They can be bought abroad, but this is a solution only for people who can afford it.

 

It sounds like opdivo or yervoy (or a combination of this and other treatments) are the best chances he has right now, which just can’t be found in Romania. Out of pocket, these drugs cost an obscene amount of money -- which no one in my family has. Does anyone have any suggestions or new avenues to consider? I have no idea how payment for drugs or how loans work in Europe.

 

I've done some intiial research into clinical trials in the US and in Europe, and I was wondering if anyone here has any more information on them? From my cursory research, it seems that clinical trials in the US are open to non-US citizens, although I imagine this would be a barrier regardless. I live next to a major cancer center in the US that is recruting patients for a trial for his type of cancer. If there was a chance he could be accepted into one of these trials, I could take him to appointments and he could stay with me. 

 

It sounds like health visas can be a little tricky but manageable if you have the logistics figured out (a citizen sponsoring you and proving that you have the money to afford your stay, etc.). My family could afford to fly him out here and cover the basic costs of his care, but obviously can't afford the whole treatment itself.  

 

I guess the real question I have is about timing. How long is the process to get into a clinical trial? I assume that he doesn't have a ton of time, but it also doesn't seem like there is an alternative in Romania. Could anyone describe what the evaluation process is and generally how difficult it is to get accepted? I'm planning on calling some of these trials on Monday to see if I can find out more. 

 

I've never had an experience with cancer before, and I'm just really down. I would appreciate any thoughts from people who know more about this type of cancer, or just have any ideas at all. Thanks so much.

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katie1's picture
Replies 9
Last reply 2/4/2016 - 9:36pm

Given the recent FDA approval of adjuvant Ipi, I wanted to let people know my husband has been NED now for 30 months since starting the IPi vs Interferon trial. He was in the 3mg/kg arm of Ipi.  He only received the 4 induction doses due to side effects. He is stage IIIC (T4bn2cM0- with deep amelanotic nodular lesion).  He had rash and itching beginning after the first dose (and then ongoing which was treated with topical steroid and benadrly), ocular (after 3rd dose-resolved with steroid drops). and He also started with minor diarrhea after 3rd dose which coninued on and off managed by Immodium.  Following the 4th dose he developed hypophysitis.  He was treated with high dose steroids and all his hormones returned to normal.  However, after his taper from steroids he went into adrenal crisis and has been steroid dependant ever since (due to adrenal insufficiency). It took a little over a year for the dosage required to stabilize (required higher dosage of hydrocortisone over time).  He is currently doing really well and is very thankful for the trial option.

I wish all of you starting on Ipi the best.  Report all side effects even if they appear minor to your oncologist right away.  Make sure you are being treated by a melanoma specialist with experience treating these side effects.

Kate

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jmm1052's picture
Replies 17
Last reply 2/4/2016 - 8:41pm

I have read with great interest the topic on IIIa using IPI- my husband will start the 10g dose in 6 weeks. We have been told that at the moment there is no other treatment than interferon and no trials for his level. The possible side effects are pretty much zero which is phenomenal- if you do get any you are to report them immediately to the doctor as any of them can be life threatening. Since this was just approved in Dec 2015 I realize not many have had experience with it yet but I'd really like to hear from anyone who has actually done any treatments   My husband has Stage IIIb with no idea where it first presented. He felt a swelling in right groin area and it turned out to be melanoma- very large 5 cm and was removed along with all of the nodes in the area this month. We are waiting for it to heal before treatment begins. At the moment he is NED but we are seeing issues with fluid buildup from the complete dissection of the nodes in that area. Has anyone had experience with any of this? 

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Renate's picture
Replies 13
Last reply 2/4/2016 - 8:39pm

Hello!  I am brand new to this forum.  I was diagnosed with Melanoma 2 weeks ago - 1.3mm invasive spindle cell melanoma on my thigh.  I had surgery last week and they were successful at removing it all but did find microscopic melanoma cells in 1 lymph node.  Having Pet Scan and MRI on Friday and see DR on Monday.  He said I will need to remove the lymph nodes in my groin.  Im trying to stay present and not let my mind race - I have to beautiful boys to raise.  Can anyone tell me what to expect - I know i need those scans back.  Im most curiious about how will my leg be affected - do I have to wera a sleeve?  Do I have to trake interferon?  Should I?  Is this a life sentence now?  Thank you for any input.  I know Ill have to wait and see but trying to be proactive.

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Anonymous's picture
Anonymous
Replies 6
Last reply 2/4/2016 - 4:45pm
Replies by: Anonymous, AllysonRuth, Janner, melj

I had a thin stage 1 melanoma removed with wide local excision and negative sentinel node biopsy 9 years ago.  Had a recent brown spot develop right along the margin of my scar- and its melanoma in situ.

I am 35 now, with three kids under four.  I am having a very hard time coping with the fear of metastatic disease and death.  I have to wait another week to meet with my dermatologist.  Anyone out there have a similar experience?

I am so confused how my tumor could come back as melanoma in situ, how it took so long to recur locally.  From speaking to the dermatologist on the phone, he thinks it may be a new primary that "just happened to develop along my scar", but I don't know if I can buy that.  He also said that, if it is a second primary, I am now at a 9 times risk for developing another.

I don't know if they can actually determine pathologically whether it's a recurrence or a new primary, or if they can somehow tell?  Because right now I'm petrified of the implications of a local recurrence (if it is still living in my skin, won't it eventually keep coming back until it metastasizes), and I'm also worried I'm at 9 times risk of another because it might be a new primary.

 

 

 

 

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keepthefaith11's picture
Replies 15
Last reply 2/4/2016 - 9:15am

Hi everyone

I have been lurking since my father's initial diagnosis back in December. He had a mole on his chest that started bleeding. The biopsy came back as stage 3b tumor. 3.2 mm, ulcerated, mitotic rate 1. Doctor could feel a lymph node in the armpit enlarged so he asked for a scan, which came back clear with the exception of the node. Last Thursday he had a SNL which showed cancer in the suspected mole. While in surgery they took out a total of 8 nodes. We got the results back today, 2 of 8 were affected. The enlarged on was extracapsular, which really got me worried. The doctor wants to start Yervoy within two weeks. He said radiation was not necessary since the lymph nodes have all been taken out. Everything had clear margins.

I am really worried, how bad is this? I know it's very advanced, but we were just thankful it had not spread to any other organs. Any help would be appreciated. Any advice? Is this the normal progression for treatment?

Thank you so much for reading, you seem like a wonderful community!

Ps. My mother has stage 3 breast cancer 14 years ago. 7 nodes involved. She is fine and has never had a recurrence. I guess this is what gives me hope and makes me not completely lose it.

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greatladywilson's picture
Replies 2
Last reply 2/4/2016 - 8:29am
Replies by: chrisholder, Momofjake

Anyone with the diagnosis of sinus mucosal melanoma?  2 years out but having lots of issues.  Am I alone? 

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Anonymous's picture
Anonymous
Replies 10
Last reply 2/3/2016 - 11:02pm

I am in terrible pain.

I have a met in my spine which is pushing on a nerve.

I have tried oxycodone and trammadol without success.

The doctor mentioned lyrica as another option.

The pain is excruciating running down my hip and leg.

I bascially cant do anything.

Any suggestions?

 

 

 

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gcooperbl's picture
Replies 5
Last reply 2/3/2016 - 8:57pm

Hi all

 

just a bit of advice needed, my dad had a turn / dizzy spell / potential seizure he is on lower dose of steroids and has brain mets. Will the doctor slow down his immunotherapy? He got first cycle last week and not to today was fine. Due to get his second on the 11th feb.....anyone been through this? Any positive news for brain mets and pembro? 

 

G

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I am getting opinions on treatment for a 1.3 mm melanoma on my leg that was removed and microscopic cells were found in 1 of 2 sentinel lymph nodes that were removed in my groin.  My surgein is recommending all the lymph nodes be removed in that area - I am deathly afraid of getting lymphodema.  It seems some people wait and see and then end up doing it.  Please tell me if you had it, did they find melanoma in your other lymph nodes, do you have lymphodema?  Is it as bad as I think - should I do it?  Thank you to all - I have been so humbled by this experience that has changed my life 3 weeks ago,  I am blown away by the generosity and kindness of strangers to help each other.

 

God Bless you ALL!!!!!

XOXO

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jenny22's picture
Replies 13
Last reply 2/3/2016 - 12:34pm

Hi to everyone,

Many of you have responded in the past to some of my posted regarding treatment options for stage 3B......

I now feel like I have a decision to make and no idea how i am going to make it.

Quick recap: Recurrent 3B.....2 intransit/local recurrences....one 11/14 and one 11/15....

Vaccine Trial Spring 2015 after 1 st recurrence

Just completed  (1/12/16)  high dose radiation.....5 treatments...by the way, side effects VERY mild and now bad.....

Radiation for local control...thought being since both recurrences were in the same place, maybe this would do it ...but of course we know it had no benefit for distant spread.

So of course my main concern at this point is what is the best option to prevent further recurrence and obvously distant mets? 

Current MED ONC-

NYU- ANNA Pavlcik- whom I adore- will not give me IPI due to microscopic colitis from Vaccine trail...it reseovled on its won and never needed steroids, but as a result she will not give IPI even at 3mg.....she is reccomending Leukine now that I have compelted radiation.

MSK- Mike Postow- not inclined to offer IPI......

U PENN- I met with Lynn Shcucter last week...she feels IPI at 3 mg is the way to go, and feels my risk of ANOTHER recurrence is 50% or better...including distant mets....Pavlick never acts as if she thinks its quite that doom and gloom. Schucter seems to think she can manage any side effects and at the first sign of anything we would stop it...even if i only got one dose in, or maybe would get all 4.....

She was kind enough to call Dr. Pavlick and discuss with her....to explain her point of view......and mine...

Dr. Schucter knows that i am leaning towards doing something more aggressive.....I cant help but think that IF this does come back that  i wont be able to live with myself......wondering why i didnt do something more agressive than leukine when i had the chance.  (BUT i would hate to leave dr. Pavlick)

I know some will say it has almost the same chance of working if it does come back, but i think that is game changer...then having to live witht knowing you are now stage IV, something all of us hope to prevent.

I am scheduled to see Dr. Pavlick on Monday.....Dr. Schucter gave me her thoughts on waht i should say to dr. pavlick...

Just curious to hear anyone else's  opinions....TOP DOCs with completely different opinions.

Schcuter said to me" I hate when we put patients in this position"...no wrong answer, but all differing opinions.

Thoughts friends?

THANKS!

Jenny

 

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Anonymous's picture
Anonymous
Replies 0

Join 2000 patients and caregivers for a great/fun event!  Go to  http://melanomainternational.org/

 
 

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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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