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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maryliz56's picture
Replies 2
Last reply 1/4/2018 - 7:44pm
Replies by: maryliz56, jennunicorn

Hi! I am 61 years old and I see a dermatologist regularly bc I have fair skin and various skin issues. I'm am used to her freezing and biopsying. Everything has been fine until this visit. I have Basel cell on my nose and melanoma on my upper arm. I have a surgeon appointment next week about the melanoma.  My doc says it's thin, .22 and she says that's good.  Why kind of questions should I ask the surgeon? And other advice? Is .22 "good?"  

I'm an outdoor lover but I always wear hat and sunscreen.  I usually wear a 3/4 length sleeve shirt, so my upper arm rarely sees the sun.  My husband and I are planning another hiking vacation trip this summer.  But mostly I'm worried about the cancer spreading.  

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PTgal's picture
Replies 2
Last reply 1/4/2018 - 3:51pm
Replies by: JRM, Janner

Here I am with more questions. My doctor (family practice/GP) performed the excisional biospy of the mole which was later confirmed as T1b malignant melanoma. He has referred me to a general surgeon for the WLE. I meet with the general surgeon on Monday and will be asking about SNB as well.

As far as follow-up afterwards, should I just see a regular dermatologist or some other type of specialist? My GP said I can have skin checks at his office, but I would feel better about going to a dermatologist at the very least. Anyone know the best place to go in Little Rock,AR?

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JRM's picture
Replies 2
Last reply 1/3/2018 - 11:07pm
Replies by: JRM, Janner

Hello everyone, I am new to the MRF Forum, but thought it beneficial to be more proactive regarding my past melanoma, even though I have been clear for five years. I was first diagnosed with melanoma stage 1 in 2013 and had a wide excision of the lesion on my upper left arm. My margina came back clear the first time around. Over the last several years and with many other moles removed, I have been seeing my original diagnosing dermatiologist twice a year for mole checks.

Today, I had two suspcious moles removed near the original melanoma scar. My dermatologist thought they were atypical nevi and did not seem too worried,  but they both had black spots within the moles. My question to everyone: how common is it to have a recurrence of early stage melanoma near an original site? If my biopsies come back positive this time around, I would imagine I would have a wide excision surgey again. Would a PET scan be advisable now?  Has anyone had experience with this? Many thanks and best wishes for good health and happiness in 2018! 

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/3/2018 - 9:38pm
Replies by: Frillie, Anonymous, Cindyco, adrianc

Greetings-

My mother was diagnosed with rectal mucosal melanoma in March of this year. We are looking for a survivor for her to connect with by phone or email to talk about their experience but this rare and aggressive cancer has made it difficult to find any current local patients. If anyone has been treated for MM, and would be willing to speak with her, we would be so very grateful.

Thank you.

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Happy_girl's picture
Replies 6
Last reply 1/3/2018 - 6:35pm

Hi! It’s been a while since I’ve posted on here.  I also just posted on MIF.  I know pregnancy has been discussed quite a bit- I’ve brought it up before on here too, but I just needed a space to share. I was diagnosed stage 3a in April 2014 when my daughter was 6 weeks old. My husband and i were hoping to grow our family. I’ve seen melanoma specialists— currently Dr Kendra at the James (Ohio State), and Dr coit initially after diagnosis (he performed my clnd- although he stated he would have been comfortable NOT doing it as well when looking at my tumor stats). Dr. Kendra suggested waiting 1-2 years before becoming pregnant, and Dr Coit suggested waiting 3-4 years.

So the question- it is now over 3 1/2 years and I am now 6 weeks pregnant. I am so excited, and then. I get moments of sheer fear and panic.... that we made the wrong choice, and that this beast is going to come back while pregnant. I’ve googled ( STUPID YES), but I seem to never find positive stories of pregnancy after stage 3a.

Any insite from anyone would be appreciated.

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baesill's picture
Replies 6
Last reply 1/3/2018 - 12:15am

Because that’s what I just got. What is the best I can expect? Is two year survival even possible now? Has anyone received any good news after 9 tiny brain mets were discovered after failing ipi/nivo while on vem/cobi...and I’ve just had two doses of pembro thrown in for good measure. 

9 just feels like so many, right? 

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LisaS's picture
Replies 3
Last reply 1/2/2018 - 9:19pm
Replies by: Toby0987, Janner

My 85-year-old father was just diagnosed with melanoma after having a very large mass (6cm+) removed from left armpit 3 weeks ago.  We are unsure of the primary.  He also has a large mass in the lower lobe of his right lung which has not been biopsied but is suspected to be melanoma.  In March he had lymph nodes biopsied in the left armpit but they were erroneously diagnosed as squamous cell.  In 2016 he had squamous cell of the right salivary gland and the gland was removed.  He attempted chemo for the squamous cell but was unable to withstand more than the one infusion.  He is not attempting treatment for the melanoma. Since he is not attempting treatment, his oncologist is unwilling to order a PET scan.  Without this scan we cannot know the current spread of disease or a prognosis.  My father resides in rural MS and is not willing to travel to a large metro area where a melanoma specialist could be consulted. At present he is in no pain and does not seem to exhibit any signs of possible mets to the brain.  I would greatly appreciate any comments on prognosis that anyone can offer.  

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jrtufo's picture
Replies 3
Last reply 1/2/2018 - 7:13pm
Replies by: Pcarpent, jrtufo, Bubbles

Hi Caring Friends-So the Keytruda didn't work for me and now I'm moving on to the Cobimetinib/Vemurafenib combo.  Living here in sunny Colorado I'm very concerned about the photo sensitivity side effect (and all of the others...)  Any one on this combo-how is it going, any success and any tips for me?

Julie T stage 3C non-resectable desmoplastic melanoma 

JulieT

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mel man sd's picture
Replies 8
Last reply 1/2/2018 - 4:28pm

I was diagnosed with Melanoma Aug. 28, 2017.  I had four moles, 2 malignant melanoma, and 2 melanoma in situ.  The deepest lesion was on my chest, .80, and was removed with two lymph nodes.  All margins were clean and the lymph nodes were negative.  I have had three additional surgeries for two basil cells with atyp cell activity and one squamas carcenoma for a total of 7 surgeries.

Oncologist A sugested a round of Opdivo, one treatment every two weeks for one year.

Oncologist B sugested observation approach with office visits every ninety days and two PET scans per year with lab work at each office visit.

I am considered a stage 2A by onc. A and a 1B by onc. B.

Any input would be appreciated.

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Jahendry12's picture
Replies 13
Last reply 1/2/2018 - 4:04pm

I'm sad and heartbroken to report that last Sunday, I lost my soul mate, father of my children, and love of my life from this horrible disease.  He fought for almost 7 years, 5 1/2 of those stage IV. Most of those years he was asymptotic until this past August when the beast came back very aggressive in his omentum and small intestine. He was on Taf/Mek for exactly 3 months when the beast reappeared even more aggressive and this time he developed malignant ascites in addition to the tumor regrowth in his intestines and peritoneum. The next step was ipi/nivo which he had 1 round. Between November & December he was in the ER & hospitalized 3 times with various issues, but of most concern were his kidneys. He went to the ER his final time on December 9th and his kidneys were failing and never recovered. He passed away surrounded by myself and our kids on Sunday December 17th. 

So hard to watch a man who was so strong get so sick in a matter of a few months.  I guess that's the nature of this beast.

I want to thank all of you who contribute to this site. I came here often for advice, support, and hope. This group is amazing. My husbands Melanoma specialist Dr Jason Luke was exceptional and we couldn't have asked for a more knowledgeable expert in his field.

Please pray for myself and my children and we try to move forward without our rock, my husband, their dad.

Julie.

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Bubbles's picture
Replies 12
Last reply 1/2/2018 - 8:56am
Replies by: ed williams, Anonymous, PTgal, Bubbles, Janner

Been meaning to put this post together for a bit and given your recent question, PTgal - thought you might find it valuable.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/12/sln-biopsy-delay-of-40-days-what-plus.html  

It covers rather new data looking at the timing of the SNLB if you choose to do it and the latest guidelines re SLNB generally.

Wishing you all my best.  Celeste

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I was dx with 1A on my left leg no follow up testing by recommendation of the oncologist due to its depth. Over the last year my dermatologist felt a lymph node in my groin area but as I’m a thin person she said sometimes you can feel them more on that body type. Also through the year I have a lipoma in my left upper arm, underneath, I have to raise my elbow to let them check it. I have been having migraines for years. That run in my family but they have been well controlled on an preventative medicine. I feel ok. My husband says I’m sweating profusely at night. He says it really gross. I don’t sweat during the day. I feel like I’m hypersensitive for some reason. I can now feel the lump in my groin along with one in my breast the lipoma and in my neck. 

What should I look for?  39 year old mama. 

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PTgal's picture
Replies 3
Last reply 1/2/2018 - 12:22am
Replies by: Janner, PTgal

In the past 8 days, I have been on a rollercoaster ride. I got the official diagnosis of mm on 12/21/17. My initial reaction was "Melanoma? Ya don't say? Alrighty then, let's remove it." Since then I have learned too much. Melanoma is not just "skin cancer". This mess kills people. I am currently pathology staged as T1b, and I have bent myself into all sorts of shapes doing body checks. Having your husband walk in the bathroom seeing you naked with a hand mirror is just one of the multitude of no-shame moments I have had with that man. Bless his heart. Anywho, during an impromptu lymph node check, I came across a small lump near my elbow. My primary was located on my right lower abdomen which can apparently drain anywhere. The issue is I seem to recall this bump in the distant past which resolved on it's own. My question is would this be a "palpable node"? Could it just be coincidental and completely unrelated? How do they test a palpable node to determine if it is melanoma? Do they just remove the whole thing? Ultrasound? Needle aspiration?

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ToddC's picture
Replies 19
Last reply 1/1/2018 - 11:40pm

Hi long term melanoma survivors. Time to chime in on the old MPIP board... let us know you are still alive and kicking!  I remember this board from years ago before it became run by the "MRF" which I'm not sure I believe in anymore but I'll avoid that discussion here.  I'm sure there are a lot of people like me that never accepted the drugs and found some natural ways to control this condition so let's hear your story again and give people here some hope.

I had stage 4 mel from arount 2008-2013 when some lifestyle changes I made seem to have made my condition go away and to my docs amazement it has not come back since. I recently had bloodwork and want to report back, no indicators of cancer and vitamin D level of 55. LdH below threshold, WBC and CRP is totally normal, everything looks perfect at age 53 now, thought I would die in 2013 but I'm still going strong. You can survuve this thing, your body has amazing recuperative ability. You just have to give it what it needs to win this fight baby!

Good luck everyone, I will spare the details in my case but I want to hear from anyone like me out there who made it through the worst of this and lived to tell about it.

Todd Conrow

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