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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Bradley75's picture
Replies 4
Last reply 5/4/2017 - 4:09pm

A brief background before I share a poem that my 12 year old daughter wrote for her 7th grade English class assignment.  I was first diagnosed in 2007.  She has watched me progress from stage 1 all the way to stage 4.  She has been there for all the surgeries, radiation, hospitalizations and now immune therapy.  She has seen and been a part of all of this.  Her poem came as a shock to me and completely blew me away.  I feel compelled to share it with all of you. 

Cancer is a Journey

By Anna Bjorklund

Cancer is a journey with only two possible endings.  It's unpredictable and deadly.  The path is narrow and bending.  It's so easy to give up, and full-on quit pretending.

To fight it you need endless strength and impossible perseverance.  For it's a road trip of great length and a tragic, cruel experience.

The first sign of it is shocking.  It's something you just can't understand.  Not until you hear death knocking, do you know what's truly at hand.

But by then it's much too late.  Now you know you're out of time.  The journey is all done, you're Home.  There's no more ladder left to climb.

There are many rule to this battle by which you must abide.  First, you must give up your normal life and set your dreams aside.  Because deep inside, you know someday, there'll be nowhere left to hide.

It's tiresome and pointless, killing something you can't see.  For every puzzle piece restored, twice as many disappear.  Those who have lived this life agree; that the only hope we need is that there lies relief somewhere.

But the paint won't last forever.  Someday it'll all be gone.  This earthly body will turn to dust, but my new heavenly body will feel no pain.  In that I can trust.

My dad has melanoma.  This poem comes straight from my heart.  When he was young, he didn't use sunscreen.  Sharing this poem helps me do MY part!

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RitysMom's picture
Replies 3
Last reply 5/3/2017 - 7:14am

I'm at MDA this week with my daughter, Kristine. She was supposed to begin a clinical trial Thursday with pembro/azacitidine. She met with the dr yesterday and shared that she's been having headaches for a couple weeks now. He sent her for a CT of the brain and we just got the news that there are lesions on her brain. The dr is trying to get her into a neurosurgeon. It looks like this disqualifies her for the trial. We're devastated...I don't know what this means for her. Four weeks ago her brain was clear. She went off the taf/mek at that time and now they're back. I don't even know what to ask except where do we go from here?

Cindy 

Mom of the beautiful Kristine

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Spl25's picture
Replies 2
Last reply 5/2/2017 - 10:46pm
Replies by: Spl25, Bubbles

I've been on Keytruda (Pembrolizumab) for about 9 months and have tolerated it well and had a good response, but seem to be "plateauing." It's been a while since my last scans, and some days it feels like the cancer may be progressing, although perhaps thats in my head. Is a muted response (i.e. no tumor reduction) a good enough reason to go forward with some radiation? Are there any other treatment modalities I may want to bring up with my oncologist to try to get a renewed response? Are there any trials that are for people in my position? Most of my mets are in organs or hard-to-reach lymph nodes. The overwhelming medical opinion seems to be "stay the course," but sometimes I wonder if that has to do with a kind of status quo bias among patients and doctors alike. 

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nicolepfeil's picture
Replies 2
Last reply 5/2/2017 - 10:00pm
Replies by: Bubbles, ToddG

We just found out that my husbands melanoma has spread to his spine.

Has anyone had to deal with this? With melanoma moving to the bones? If so what was the treatment or prognosis?

Foes this mean he now has stage 4? His oncologist is gone till next week and I can't get any answers,

 

Thank you.

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Julie in SoCal's picture
Replies 17
Last reply 5/2/2017 - 9:17pm

Hi there Melahomies!

This morning while putting lotion on my arms, I noticed two new lumps next to my SNB scar.  I had thought that I was a complete responder to Pembro but alas, it's back. I just thought I was done with Mel. Guess not.

A week from Monday I'll have a VATs procedure for lung cancer. The surgeon will take the offending lung lobe (with Larry) and some lymph nodes and hopefully, that will be it for me.  I can't imagine fighting this on two fronts. 

I'm just complaining at this point. I won't really know anything until Larry the lung tumor comes out and we get a better look at him.

Thanks for listening,

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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Hello everyone,

I was wondering if there was anyone out there that has run into Adrenal Insufficiency post Immunotherapy treatment? My treatment ended late May 2016 (Nivo) due to side effects and a recurrance in a lymph node. Continued to feel poorly and was put on Prednisone for 4 weeks 40mg tapering down to 10mg. Felt great and then a few weeks passed and began to feel poorly again. Finally last week, I was refered to an Endrocrinologist and I was diagnosed with Hypophysitis / Adrenal Insufficiency and have been put on Hydrocortisone 20mg morning 10mg afternoons. I'm feeling ok but not as good as when I was on the Prednisone. Better, just not 100%... maybe 85%. Also, Thyroid is weak so they put me on a low dose supplement. I'm an athlete and during this time I lost at least 40% of my muscle mass. Trying to gain some back but it's a slow tiresome process in my current state.

Was wondering if anyone else has gotten this and how they're dealing with it? Are you on Prednisone or Hydrocortisone? How do you feel? Any long term effects, things to watch out for? Were you able to get completely off the steroids?

Finally, does anyone have recomendations for Endrocrinologists that has experience in Immunotherapy side effects. There are a lot of good Endros out there but few with this experience.

Thanks!

Juan

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jbronicki's picture
Replies 1
Last reply 5/2/2017 - 12:36pm
Replies by: CindyCo

It's hard to think of Melanoma in terms of "upsides" but one is that you realize people got your back.  I'm a librarian here at University of Houston and other librarians here send me any new research that pings for Melanoma (it really touches me that people are out there checking for research, and as a data person, I know how important research and Open Data is to our community).   Following up Joyce's article, a librarian just sent me this about research being done here at UH, a  different approach to TCells: 

https://www.eurekalert.org/pub_releases/2017-05/uoh-ect050117.php

I'll be following this research and this professor!

Jackie <3

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Hi all,

I am newly diagnosed 1A.  I have kids and want to do everything possible to stay on the good side of the statistics.  I have been told to wear protective clothing at all times during daylight hours but that seems really difficult.

I run marathons and I can run a lot of my miles on a treadmill but when I'm doing a hot long run in the summer, I can't imagine wearing long sleeves and tights...

And it feels sad to me not to wear shorts all summer.  Though I can get over the sadness - I would rather be alive with pants on if it's important.

So, I guess, I wonder what you think about sunscreen vs. protective clothing when you are outside?  Is sunscreen ever enough if you're outside for a couple of hours? Or is protective clothing really the right answer.

Also, I have a number of moles on my back and stomach but don't have any on my arms and legs.   So, are my back and stomach the most important areas to cover or does it not matter?

As I said, I have kids and more than anything I want to be there for them as they grow up.  I'm wondering how you all handle the need to avoid the sun with living your life.

Thank you for any thoughts,

Katie

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/1/2017 - 4:02pm
Replies by: Anonymous, UBContributor, Janner, casagrayson

I was diagnosed with stage 1a melanoma on my upper right back 5 months ago. It was shallow, .30mm and I had an WLE with no further treatment.

A couple of days ago, I discovered a hard, immovable lump on the back of my neck. it is just about an inch and a half  or so to the right of the very middle of the back of the neck and is perhaps 0.5 to 1 inch above my hairline.

the size is small, and it feels somewhat smaller than a pea. to give you a better idea, if i am sitting with my neck up, and if i pass my hand over the region, i feel nothing. even if i move my neck in all directions, and just pass my fingers over the region, nothing can be felt. but if i tilt my neck to the bottom and press hard, it can be felt. if i tilt to the bottom and to the left, it can definitely be felt even more.

it's not causing any kind of discomfort so far. but if it is pressed hard on and off for a 10-15 seconds, there is a level of pain sensation, though nothing excruciating. it does, however, seem to be embedded deep within.

I am scared as I have been told if melanoma spreads, the first place it can go is the lymph nodes in neck or armpit. I am otherwise healthy and fit and have not recently been ill or had any infections. . Have made an appointment to see the doctor but wondered if anyone here has any experience with something like this

Thank you so much

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Janner's picture
Replies 13
Last reply 5/1/2017 - 1:40pm

Hi everyone!

Just posting a little positive news here.  It's often easy when reading this site to think every early stage person progresses.  What we don't see is those that move on and have no reason to post.  It's the 25 year anniversary since my first melanoma primary was removed in 1992.  Seems like a world ago.  No internet, no information, no support system back then.  I didn't know a single person who had had melanoma.  Even the medical library at my local university had only gloom and doom information.  What a difference to today.  This is amazing website of people and information - we are all so much better informed today.

For me, the 1st primary wasn't my only encounter with melanoma.  I had two more primaries 8 and 9 years later.  But nothing since 2001.  My adoptive parents have both have melanoma - it is what took my Dad.  And my birth Mom and half-sister have both had melanoma.  I can't seem to escape it nowadays.  It has also brought me some amazing friends from this website from way back.  (I've been on this site since 2001).  I'm just so thankful we have the support and resources and information available to us today that was sadly lacking 25 years ago!  And treatments!  The world is an entirely different place in regards to treatments for melanoma. 

Carry on, I wish everyone well, and remember despite how it appears here, MOST early stagers do NOT progress!

Janner

http://www.MelanomaResources.info

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/1/2017 - 9:18am

  Does anyone have any suggestions for someone that is on Opdivo/Yervoy and their mouth is so dry it is difficult to eat.  Water does not seem to help and he is using a rinse for dry mouth, but its difficult to use it as often as he feels the need.

 Thank you!

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/1/2017 - 4:11am
Replies by: CynthiaLee

I'm a 39 year old who was recently diagnosed with melanoma. a couple days ago I had a wide local excision between my 3rd and 4th toe and a skin graft.  I was sent home and told I didn't need a boot or crutches.  I was able to put weight on my heel post op but I think that's because the local anesthesia was still in effect. By yesterday I had to crawl to the bathroom. My husband went and bought me crutches to help.  My doctor advised me to keep my foot up as much as possible however I don't see how anything else is possible. My foot throbs whenever it's not elevated. 

I am wondering if anyone on this board has had this surgery and advice for what to expect.  My doctor made it seem like 7-10 days before I could resume normal activities but 3 days in with no improvement has me a little discouraged. 

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Anonymous's picture
Replies 2
Last reply 4/30/2017 - 9:52pm
Replies by: Anonymous

Has anyone have mohs surgery after excision did not get it all?  3rd primary in a year.  The first 2 required a surgeon due to thickness.

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My husband and I moved to Alabama Gulf Coast to be closer to family, following 6 months NED. Before the move, we were blessed with the most wonderful doctors, including our surgeon, oncologist, and dermatologist. IF complications developed, or there were any indications that anything other than cancer was causing discomfort, they scheduled an appointment with and communicated with either our primary or the specialist that they sent us to. After moving, we got referrals to doctors close to new home. We're quite happy with the new dermatologist, but we are not happy with the oncologist. He has an excellent reputation, and although he may be clinically proficient, he is nothing like our previous doctor. I will try to be factual, since this is a very subjective matter. Although my husband has a visible tumor on the right side of his jaw, and has had problems with extreme shortness of breath, and fever, this oncologist has never once touched my husband other than to shake his hand. He does not touch the tumor, nor feel his lymph nodes, nor listen to his breathing. Any complaints about fever or fatigue or achiness or shortness of breath are dismissed as "side effects" with no investigation. My husband was scheduled to be put to sleep to have a port inserted when I demanded a chest xray, and found that he had pneumonia. Port was postponed. Additional xrays taken 2 weeks later. The oncologist said xrays looked worse but that this was "common" with pneumonia. Port postponed indefinitely, but treatment # 2 (Yervoy and Opdivo) was given. Today, I took my husband to an American Family Care near us, along with copies of all medical records, etc. Bottom line, he has pneumonia, probably never got rid of it. Monday he will be referred to pulmonary doctor. Today he was given an antibiotic shot, a steroid shot, and Levaquin(oral antibiotic). If there is not significant improvement, quickly, he will probably be hospitalized until the respiratory issues are under control. He has an appointment for Infusion # 3 Monday. That may need to be postponed. I plan to speak with the oncologist (or more likely his assistant who we see more of) and ask to be transferred to the care of another doctor in the same group. I will explain why and hope that there is a more caring, concerned, and diligent physician in that group. If there is not, we will transfer to another facility altogether. I acknowledge that we were blessed beyond belief with our original doctors, and that my expectations may not be realistic. I would like to hear about your experiences and expectations so I can better assess whether I am right to be concerned about the lack of quality care from this particular oncologist. As always, thanks bunches for listening to my ranting. I try not to burden my husband with it and focus on being positive and uplifting around him, so the chance to vent is truly appreciated and probably vital to my own mental health. So what do y'all think? Is this normal for an oncologist?

Alison - wife of Roy, Stage IV Metastatic Melanoma

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