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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jade1111's picture
Replies 15
Last reply 4/14/2016 - 12:57pm

Hello!

My mom was recently diagnosed with Stage 4 Melanoma. It is currently in 1 inguinal lymph node, right adrenal and liver (2 small lesions). Though this is stage 4 and not good it does not seem as bad as it coud be. We have talked with a couple of different Drs as well as a complemtary care Dr and looks like choices are as follows. Wondering if anyone has any input on the following therapies and how they figurd out in initial treatmet process how to proceed. It feels overwhelming!! Excuse my spelling and improper use of med references. Still learning med lingo.. They say the names so fast in appointments its a blur!

-Anti Pd1 therapy (keytruda) solo? We have heard different stats on how effective this is. And are concerned about side effects. Currently she feels fine, just swelling in leg..We have been told this is a good time to start treatment but it seems scary wheone someone feels fine to then take on the potential serious side effects. But at the same time have heard the therapy works better when not as heavy load to deal with? IS there a harm in trying this first.. Because one Dr was pushing the clinical trials..

-Clinical Trail: Find a Trial that uses combo meds? Will she be excluded for trying Anti Pd1 alone first? What are advantages? Isnt a cinical trial riskier in some ways.. side effects wise. And then to stil manage care locally if doing out oof area.

-Targeted Immune therapy: Not sure postiive for BRAF yet. Heard these work well but may not last as long?

-Immune Therapy and Infusion (AntiPD1) combo... I guess this is a trial? 

-Advocate for ablation/cyberknife in the groin, adrenal and liver.. or one area. Looking for a Abscopal effect. Not sure whom would go for this type of treatment and if an argument coud be made for it in these locations.

Thanks so much for all information on this board. Its overwhelming in the appointments but with what I have read and try to understand on here I feel a little more educated.. probably like others on here.. not what I was planning to learn so much about! 

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landonm's picture
Replies 11
Last reply 4/15/2016 - 9:47pm

I am newly diagnosed with a positive lymph node in my neck (biopsied because it was enlarged 4 months after having a WLE of a melanoma on my neck).  I am getting an MRI brain and CT neck, chest and abdoment this week, then going to the melanoma clinic at University of Michigan at the end of the month to meet the team and find out my stage, plan, etc.  I'm trying hard not to get ahead of myself and to trust the process but I am concerned because a PET scan was not ordered.  Is this not routinely done at this early point?

Peggy Landon

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Tamlin's picture
Replies 15
Last reply 4/16/2016 - 10:28pm

Just got diagnosed today. After 10 years of being NED..... It has returned. I had a ct scan today which thankfully didn't show anything outwith the lymph nodes, however the fine needle biopsy in my right groin proved to be melanoma and I don't mind saying I am scared witless. I am going for a pre op assessment tomorrow morning and the surgery next Wednesday for lymph dissection.

im scared of the op, I'm more scared of the diagnosis and still haven't really got my head round it. I haven't shed a tear, it just all feels like it's happening to someone else X 

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Hello! 

I thought some of my LA mel friends would be interested in attending this symposium that AIM at Melanoma & The Angeles Clinic are hosting.  Lots of awesome docs and topics! 

https://www.aimatmelanoma.org/living-with-melanoma/patient-caregiver-sym...

Best,

Katie 

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CHD's picture
Replies 7
Last reply 4/23/2016 - 12:32am
Replies by: CHD, JohnA, Mary-E, Becky, Teochasse

I can't find the post, but I could have sworn I read earlier someone said a specialist/doc told them there are no long-term survivors of mucosal melanoma?  Does anyone have more information on this?  Been told the same thing?  Studies?  Been told the opposite?  Known someone who is a long-term survivor?

Not sure how long-term survivor is defined.  I am 3 years out from my diagnosis of vulvar melanoma with radical vulvectomy.  Stage I-II with regression but no lymph node involvement.  Later diagnosis of vulvar MIS, three surgeries total, but last PET scan in August clear.

I had not heard that there are no survivors long-term.  Does anyone have more info on this? Long-term meaning how long?  I know this is going to nag at me until I figure it out!  Have tried researching it for myself but no luck.  Am not scheduled to see my specialist until August, so long time to wait for answers. :)

Thanks in advance.  I will happily accept personal stories. :)  Ugh, this disease just keeps me in limbo sometimes.  If this is what the specialists are saying, I want to know that, too.  But definitely curious how "long-term" is being defined here.  My understanding was that mucosal melanoma survival was similar to cutaneous in that depth, ulceration, mitosis rate, etc., all had an impact.  But I don't recall ever discussing exactly what "long-term" survival for us actually meant!

I realize not a lot of us here on the forum, but any insight appreciated.

Cheri

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Maureen038's picture
Replies 9
Last reply 4/17/2016 - 6:33am

My husband had his second scan with TDM1(Sloan Kettering found he had an over abundance of the her-2 mutation).  We are so thrilled!!! He has only two very tiny lung nodules left. Hopefully, the drug will continue to work. My reason to write is to encourage everyone to keep fighting and to look everywhere for alternatives. He has done HD interferon, TIL at NIH, Ipi /Nivo in Pittsburg and DTIC in md. We are not giving up!!! We wish everyone the best!!!

Maureen

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Anonymous's picture
Anonymous
Replies 11
Last reply 4/13/2016 - 6:05am

I am starting Pembrolizumab next Monday.  I have a list of possible side effects, but I was wondering when they started?  I have two toddlers and am trying to figure out if I will need help the days following treatment.  Thank you so much for any answers or advice.

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Hikeratheart's picture
Replies 1
Last reply 4/11/2016 - 7:36pm
Replies by: Janner

Hi all, 

I saw my Derm about two suspicious spots , one a blister on my toe, and another, spot on the inside of another toe. I am happy I went in, and the Derm confirmed, no reason to remove, but keep a watch on them. I do have an excellent Derm, who takes the time to do through checks. I also know I must be diligent. I have stage 2b and had a tumor surgectly removed last July.   My question: when getting life insurance do I need to report I have (had) cancer, or because it was removed, it shouldn't matter. I ask because my premium is higher until I am 1 or 2 years NED.   Thoughts?    Thanks  to all of you!

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Marie with 4 boys's picture
Replies 6
Last reply 4/13/2016 - 9:48am

I'm wondering what you all have found useful in helping your kids deal with your diagnosis. I'm especially interested in young children. My 3yo has no clue (which is fine with me), my 9yo is pretty OK with things, but my 5 and 7 yo are having the toughest time. Fortunately, my diagnosis is good, just lots of surgery ahead, but I'd still like ideas if you have them. Thanks.

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Gene_S's picture
Replies 21
Last reply 4/14/2016 - 4:26pm
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laulamb's picture
Replies 6
Last reply 4/11/2016 - 11:06pm
Replies by: Janner, Mark_DC, SamS, Teej, Anonymous, Marie with 4 boys

I am having a WLE and SNB done on Thursday.  Could someone please let me know what I can expect as far as recovery time?  I'm assuming I would be able to be back to work on Monday.  I work at a desk. 

Thanks so much and prayers for not spreading to lymph nodes are greatly appreciated.  

Laura

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GeminiBird's picture
Replies 2
Last reply 4/12/2016 - 5:01pm
Replies by: ashley_k, jennunicorn

I was diagnosed with melanoma in situ on the separate occasions and in 3 different areas. All the research I've done and info I've read point to certain risk factors including family history, severe sunburns, extensive sun exposure, fair skin, red hair, etc. I have dark hair, medium complexion, never tanned in the sun or tanning beds, no serious sunburns, and NO family history on either side. Anyone have a similar story and what have you learned about this?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/10/2016 - 3:57pm
Replies by: jennunicorn, Anonymous

I have a mole that is changing color. The last pic I can find of it is from late 2014, so about 18 months ago, and it was a barely-there brown, like most of my freckles. Now it's a much darker brown and darker than anything else on my arms. The thing is...it's only 1mm, so I don't know if it's even worth having it looked at. I'll bring it up at my next skin check regardless (6 months from now), but does it warrant making an appointment sooner? What would you do in my shoes?

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Mark_DC's picture
Replies 20
Last reply 4/20/2016 - 4:06pm

Dear Forum members,

Thank you for creating this forum -- have been reading the last few weeks since my Stage III diagnosis and surgery to remove melanoma on my leg (on crutches and home two weeks). Sad that I have to join you (!) but also amazed at your stories and also all the help you are offering each other. Through you I have learnt so much about this disease (Celeste's guide to all the abbreviations helped lots, she may not have realised, plus others' links to videos and talks).

I am sorry to start my first post with a question, and not with cheering on fellow sufferers as they await their scans, have been praying for them and thinking of them though, the last few weeks. Has been hard for me to write and I have been putting this off, but I need your help and respect your advice.

Melanoma on my lower left leg in 2014 recurred in February 2016 (am now T2aN2cM0). Fortunately my SNLB was negative both in 2014 and again in February. Had not expected this to recur :( Was assuming that it had been removed in 2014, odds were in my favour I thought! Now because it has recurred I am considered IIIB, although my lymph nodes are negative thankfully and no mets detected on CT and MRI. Live in DC and am being treated by Dr. Gibney (and I think Dr. Atkins too).

My question is, what should I do now? Should I take adjuvant therapy? I have been offered:

- Clinical trial between pembro and interferon (both adjuvant)

- Ipi as adjuvant

- Watchful waiting

It is very hard for me to decide. To me, the downside of the clinical trial is the interferon arm -- forum members seem to be pretty negative about this, about its efficacy and the side effects. What if I get placed on the interferon arm? Yet I know some of you are taking this route. And if it helps, then it could be worth it. Until recently, I would have preferred a clinical trial vs. ipi but this is not available. I understand there is a trial of pembro vs placebo, but not close to me (I could travel if needed, and know that many of you do).

I was going to take ipi as adjuvant, but when I sought a second opinion at the doctor noted the side effects, including in the worst case death (1 percent). The second opinion also cautioned me that side effects from ipi (maybe even from pembro) could limit my clinical trial options in case I move to Stage IV, which I kind of fear is likely given my progression from I to III. I might be prevented from taking some combination therapy clinical trials at Stage IV. I know some of you are taking this route though, so would welcome your advice, why did you decide this over watch and wait?

Final option seems tempting, my job involves international travel, and taking immunotherapy would kind of rule this out according to my second opinion doctor. If things flare up he thinks I need to be close to my doctor.

But I also dont want to duck out and take the "easy" option. I have a good job and I will not be penalized for taking treatment, I do not have to travel, it will mean taking a back seat for a while, but thats OK, my job will want me to do whats best for my health. I should make every effort to fight this thing and ideally kill it off. But is there a good way to do this? Do the medicines really work for III (my second opinion doctor suggested the immunothrapies worked better against solid tumours than cancerous cells in the bloodstream, because the tumours themselves have immune cells or something like that). Should I instead watch and wait, hope not to go to Stage IV, but if I do go to IV then try to fight it like many of you on this forum have? Or should I be pro-active now (but only if it helps, right?)

I meet my doctors on Wednesday and we need to make the decision then or shortly thereafter. I am very confused and would welcome any advice. They seem to recommend the clinical trial, but I am not so keen on interferon although on the plus side it does seem a known quantity -- I might be depressed for a year and buy one year, but side effects not disastrous, right?

I again thank you for reading this and also the many useful posts on this forum, and also the amazing stories, happy and sad, which always move me.

Good luck

Mark

 

 

 

 

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WithinMySkin's picture
Replies 1
Last reply 4/9/2016 - 1:59pm
Replies by: jennunicorn

I hadn't heard about this, but definately a good read for the men on this board. And no, this isn't spam!

http://m.nationallawjournal.com/#/article/1202754509492/More-Than-100-Vi...

WithinMySkin

www.Withinmyskin.com

 

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