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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HopefulOne's picture
Replies 5
Last reply 5/29/2017 - 8:53pm

Today marks my husband's second "birthday" as he calls it. Two years that he's been NED. Two years since he started Keytruda. 

As we celebrate this day, I remember where we were just four years ago. Faced with a Stage IV diagnosis, a tumor ensnared around his spinal cord, the despair of a failed clinical trial and all two weeks before our wedding. 

Fast forward two weeks from then ... Despite undergoing major back surgery, Joe got on a plane and we flew to Vegas to get married on the day we had planned, June 1, 2013. Our overall amended wedding/honeymoon plans now included driving up to Lake Tahoe to visit with vacationing family and then return to Vegas to fly home to Pennsylvania. 

But by the time we made it to Tahoe, the trip was taking a toll on Joe and we had to fly home from Reno just two days after arriving there. 

At all the airports during our travel, I was pushing Joe around in a wheelchair and he wore a pretty heavy-duty back brace. If someone asked what was wrong, Joe just said, "I had back surgery." He didn't share the cancer drama. 

At Reno, we boarded our Southwest plane first and got settled in the first row. Joe next to the window, I in the middle seat. Next to me sat an older gentleman. He asked Joe what was wrong and, to my surprise, Joe revealed: "I've got cancer. I had a tumor around my spinal cord." The guy said wow and wished him well.

As the plane sped down the runway for takeoff, the man turned to me and said, "I had cancer too. Twice." "Wow," I said back, wondering in my head what kind he had.

As the plane soared into the air, he turned to me and said, "It was melanoma. Twenty years ago when there really wasn't any treatment at all. It was under my armpit and in my lymph nodes." This is EXACTLY how Joe's melanoma had resurfaced after 18 years of being "gone." Just seven months before his back tumor.

I feel that day, as we flew thousands of feet in the air, we were touched by a hope angel. 

That the road ahead might be rough. That more surgeries might be in our future. But that more important than anything was to never give up, to always have hope.

The reason I share this story with you? My sincerest wish is that it brings you hope, at this moment you so yearn for it like I did that day, whether you're reading this at 35,000 feet or while sitting at home nestled on your couch.

All the best always,

Kimberly

 

 

 

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Shaneswife's picture
Replies 7
Last reply 5/29/2017 - 6:59pm

As I posted on Saturday, Shane had a grand mal seizure. They put him on Dilantin and sent him home. Sunday evening we're driving back from groceries and shane starts talking gibberish. Like actual gibberish. I asked him the day the month and the year and he couldn't give me the right words. I asked if he knew his name and he shook his head no. At this point he lost his ability to speak. Called 911 as I was thinking a stroke. Once in the ER Shane continued to deteriorate. He started having multiple seizures but they gave him Ativan to stop them. He was in and out of consciousness in the ER. They did a cat scan and found that he had significant edema around a lot of the tumors. They've attributed this to the reduction in his steroids. He was fine at 8mg and they dropped to 4mg a week ago and he was fine til the first seizure Saturday morning. The ER advised to continue with the taper so this morning he only had 2mg of dex. Then this all happened at 7pm Sunday. They've admitted him to hospital and loaded him back up to 16mg of dex. 

The nurses have been taking great care of him and let me spend the the night. However I can't sleep a wink hence my 4am post. 

We shall see what the oncologist says tomorrow. I'm not sure Shane's in any position to even start his first infusion of pembro on Thursday as scheduled. 

You have all been so kind in your words of support and I've appreciated every response and message sent. I will message back or call once things settle here. 

Thanks for listening to me. Again. 

 

Janis 

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betsyl's picture
Replies 2
Last reply 5/29/2017 - 7:35am
Replies by: Ed Williams, Patrisa

About half-way done with planned six-month course of Keytruda. Got scan results this week:

========

1. Partial response to therapy with significant decrease in size of the mass posterior to C7 and near-complete metabolic resolution of the right upper back skin lesion.

2. FDG avid focus within the posterior aspect of the left prostate is nonspecific on PET and could be due to focal prostatitis or malignancy. Please correlate clinically/lab results.

========

Not sure how to take this. The possibiltiy of a second cancer (prostate) is concerning, though we know prostate cancer is (usually) very slow growing.

Can a "partial response" turn into a "full response" later? Or once a partial always a partial?

-Betsy

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Ridingaroundwith27Jennifers's picture
Replies 4
Last reply 5/29/2017 - 12:18pm

Has anyone had severe muscle spasms and burning pain?  I have this down the right side of my body, neck, shoulder, upper arm, abdomen, groin, leg, and foot.  This is the foot I had lost sensation in from the removal of the brain tumor.  The surgeon was quite positive I would regain sensation so at first I thought maybe this was related to regaining the feeling.  Then it moved up into my abdomen and should.  I'm worried this is due to tumor growth.  I'm worried.  Especially since this is only on my right side.  If the turmor is growing could it cause spasms?

Thanks

Jennifer

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Hammers's picture
Replies 7
Last reply 5/29/2017 - 8:31am
Replies by: Hammers, Janner, Anonymous, UBContributor, casagrayson

Hello,

I was diagnosed in Feburary with a pt1a tumor on my back, depth was .38 and no ulceration or mitoses.  WLE was perfomred and I have had my first follow up.  I have had 7 other spots removed that all came back normal or mild atypia.  My question is, I have developed a small dry caugh in the past week.  How long should I wait before I call my Dr. and let her know?  I don't want to freak everyone out and then end up getting irradiated for no reason.  I also have intermittent GERD that has caused a minor caugh in the past that has been acting up, but now I am paranoid since the MM diagnosis.

How long should I wait to go into panic mode and call my dermatologist?  

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AliCat61's picture
Replies 2
Last reply 5/28/2017 - 1:04pm
Replies by: Bubbles, Spl25

Wouldn't you know we would get the radiology report on the Saturday before a holiday! We will have to wait until Tuesday to talk to anyone, and it will have to be a Nurse Practitioner as the oncologist is away at a conference. Arghhh! To give a little background, hubs was diagnosed with nevoid malignant melanoma in 2015, did a year of interferon treatment, and in January 2107 was diagnosed with metastatic cancer after a PET SCAN lit up parotid gland and very small spot on left lung. he's had 3 out of 4 combo treatments (Opdivo and Yervoy) and is scheduled to get the 4th one on Wednesday. He was treated twice for pneumonia and Monday the pulmonary specialist decided to do a CT with contrast and a CT without contrast as well as bronchoscopy. The pulmonary specialist said everything was "fine" but the report that we got in the mail today is concerning. 

FINDINGS: There is a 12.5mm nodule within the superior segment of the left lower lobe. This appears increased in size from comparison exam. This is noncalcified in a somewhat spiculated margin may represent a pulmonary neoplasm. There is a small left pleural effusion. 

Cardiomegaly: Pulmonary vascular congestion with evidence if interstitial alveolar edema. Prior granulomatous disease. Limited imaging of the upper abdomen shows a small hiatal hernia. 

A small mediastinal and hilar lymph nodes. These are non-specific. Or degenerative changes of the spine. 

Impression: Enlarging nodule with the superior segment of the left lower lobe. This may represent pulmonary neoplasm. Followup PET CT is recommended after the patient has pulmonary edema has been corrrected. 

To me, that sounds like that tiny spot in lower left lung may not be so tiny anymore. The area around his parotid gland on right side of jaw line extending behind ear enlarged and became hard and painful after initial Opdivo&Yervoy Infusion. It began to press on a facial nerve and caused a few days of intense pain. But then after about 4 days, it began to shrink and has shrunk consistently. Hubs say he can't even feel the initial little pea size lump anymore. It doesn't really make sense to me that one spot would seemingly respond so well, while another grows larger. Any thoughts? I thought if one spot responded, all would, since it's all melanoma, but what has your experience been? Tuesday seems like a very long time from now.....

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Shaneswife's picture
Replies 8
Last reply 5/28/2017 - 1:23pm

Things were such a normal morning. Until I saw shane and he was in such a fog. Couldn't speak and was wandering around. I got him to sit down and he started seizing. Grand mal seizure. We are in hospital now and they are loading him up with anti seizure medications. It's absolutely terrifying to see him seize. I really thought he was dying right then in my arms. 

 

Janis

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maryb-z's picture
Replies 10
Last reply 5/29/2017 - 10:34am

Hi Everyone,
Jamie's wife contacted me and said ever since the melanoma went to his spinal fluid it's been hard for him to post here.I'm heart broken to inform you all that hospice has been called in to assist Jamie. Please keep him, his 3 adorable young kids, and his wife Shawn in your thoughts and prayers. It was his birthday yesterday.

No One Fights Alone

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Jeff_in_FL's picture
Replies 5
Last reply 5/27/2017 - 1:40pm

Hi all,

Here's a question that I'm curious about:

When someone mentions "tumors" in their postings, are they usually out likely referring to moles, or would it be more likely lumps? I constantly see posts where people mention something like "...I found two more tumors ...". Just trying to correctly understand the terminology.

Thanks,

Jeff

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Bobman's picture
Replies 1
Last reply 5/27/2017 - 2:05pm
Replies by: AliCat61

Greetings  warriors . ...Had a pet scan last  Thursday , and here is how it reads:

"There is a mildly  hypermetabolic complex nodule  in the superior  right  upper  lobe that has SUV max of 1.2 new since the previous  study of 4/28/16. This lesion  may have an underestimated  SUV-max due to its  small  size. This could  be either inflammatory  /infectious  or metastatic . Previously  in the same region  there  was  a  cavitary lesion  that was not metabolic . "

There is persistence  of the anorectal activity  with SUV max of 6.2, previously  8.1 that requires  endoscopic  evaluation , if not already  done.

So , as many of you know I'm  in a holding pattern  trying  to get to the specialists  at UCSF. Been denied  twice by insurance , and currently  in appeal ,which the folks  at the University  helped to organize . They want to see me ,but we're  just waiting  the decision  on the appeal  before  moving  forward . Should  know within  a couple  weeks  on that. In the meantime , I'm  going  to rest up another  week , then start the cutting  again . I have about 20 more lesions  that need to come off pretty  quick . It's  just me and my surgeon  until  I   get to California . 

As a side note about my oncologist  and the current  results , at first he was all gung-ho  about my heading  to the university , but when  I  pushed  him hard to put it in writing  to help me, as my surgeon  did...he back pedaled and said  he didn't  think  they  could offer anything  more than I get here.

I know better  after all my experience  now,that's  it's true  what you all have stated so many times......get to a melanoma  specialist ! !

I'm trying like hell, and it's  going  to  happen . Eleven  primaries , and holding.

Bob

We are one.

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/29/2017 - 5:02pm
Replies by: AshleyS, Anonymous, Ridingaroundwith27Jennifers

My step-daughter, who is eight months pregnant, has just had a preliminary diagnosis of Stage 1B melanoma on the sole of her foot. Apparently she will have a wide excision and a sentinal lymph node biopsy within the next couple of weeks. She meets with specialists next week to make a plan, but meanwhile, we are all very worried for her and the baby. It would be great if someone who's been in a similar situation could share their experience.

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Maureen038's picture
Replies 11
Last reply 5/27/2017 - 11:58am
Replies by: Maureen038, Ed Williams, UBContributor, Bubbles, Anonymous

Hi all,

    I visited this site a lot but don't write on it a lot. I care so much for everyone here and truly hate this disease!!! My husband had scans on Thursday and has a new 1.5 cm nodule in his liver. Everything else is stable but having a different organ involved is terrifying. He had a MRI this morning so we're in the awful state of waiting and wondering what's the best option. Please give me advice on what's best for Bill.

love to all,

maureen

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RitysMom's picture
Replies 4
Last reply 5/29/2017 - 2:17pm

I thought I had read somewhere that you could start immunotherapy when on steroids in some situations. Is this true? Can anyone point me in the direction of articles, studies, etc.? My daughter just finished two weeks of WBRT on Wednesday. They tried tapering her quickly off the steroids so she could begin immunotherapy by 5/31. She ended up having a seizure and falling, so they went back to original dose. Now, they're tapering slowly over a month and she won't be able to start immunotherapy until June 28th! I'm so afraid that the tumors in her body can come back/grow during that time. Am I being unreasonable to think they could taper her a little more quickly, so she could begin treatment earlier?

Cindy 

Mom of the beautiful Kristine

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/26/2017 - 2:48pm
Replies by: jennunicorn

A 25 year old mother to a two year old, I never questioned my skin care when it came to the sun. 

I grew up in a remote town (an island) in Maryland and spent my summers on workboats with my father and had my share of sunburn and tanned skin. As I grew older, my skin tone continued to tan easily with minor sunburn here and there. I use sunscreen on my daughter religiously, but I opted for tanning oils for myself mostly. I also was an avid tanning bed user (3-4 days a week) for about 5 years. My mother is italian, so my complexion is on the medium side, but there are periods of time when I don't tan (indoor or out) that I am borderline pale. 

I have freckles here and there on my shoulders and chest, and I have two raised cherry freckles that have never been concerning to doctors. 

About 6 weeks ago, a new mole on the outside of my armpit close to my shoulder appeared. Small, and very black. I ignored it until about two weeks later. I noticed it was a tad bit bigger. I again let it go. 

Two weeks ago I found myself itching it, not often but when I did, it made a tingle sensation. The same week, I started having pain in my underarm like swollen, tender lymph nodes. I asked my husband, and he said I should get it looked at. I called the dermatologist, and they stated they had openings about 3 weeks later. When they asked what I wanted to be seen for and I explained, I was put on hold and was informed to come in first thing the next day. That scared me. I just went, and the dermatologist asked no questions about my history, just said new moles should be checked. He said he wasnt concerned, but wanted to shave it and send it to the pathology lab. He said most people with olive skin tones/dark hair and eyes do not get skin cancer, and since it was a new mole entirely, it was nothing to worry about.

Is this right? Everything seems to read new moles over 25 years old should be checked out. Does my complexion make me less of a target? Should there have been more conversation about my history with sun exposure? 

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/26/2017 - 12:56pm
Replies by: Anonymous

Hello everyone.

I have a question see if anyone has come across this. I was diagnosed in 2015 with 3 primary melenoma. Melenoma in situ and also stage 1a and 1b. I only had surgery as they said mine were under 1cm. Since then I have several basal cell removed but no melenoma. I went to the Er last week and had a high d dimer test so they had to give me a c.t scan of the chest everything came back fine, but now I am wondering if the d dimera has anything to do with all the skin cancer I have had. My doctor,said anything can raise it level. Any suggestion would be great. Should I get it retested? The reason i had the ct scan was right arm pain and chest discomfort which they didn't know why but because of elevated d dimera they had to do d dimer. Thanks everyone

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