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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Anonymous's picture
Anonymous
Replies 1
Last reply 12/24/2017 - 1:04pm
Replies by: Bubbles

Hello I'm Lorenzo and have a son 14 years old. We suspect in a very light way he could have a melanoma. The mole is In the arm
3 years ago, a brown mole he had become reddish. After this. Within a little months it become white. 3 years has passed and the mole has stayed white but he didn't tell us. He was 11 years old and didn't told about it. It is 4mm and symmetrical. However, when his arm is extended a line comes out of the mole. Thus line makes it asymmetrical when it's extended. There's nothing bad looking in the white-skin colored mole, only that if you look very hardly, you can see a very light dot in the center. We need some recommendations. Pediatrics doesn't suspect of melanoma. Thanks for your help
Lorenzo

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doxiemom's picture
Replies 15
Last reply 1/9/2018 - 3:33pm

Hello dear MRF community, I'm new to posting here. I was diagnosed with Stage 4 in May. First presented mets in breasts. After 4 rounds of Keytruda, it spread to spinal fluid. I then went on BRAF combo, which I couldn't tolerate (ongoing fevers). Next was radiation. And this coming week I'll start the other BRAF combo. Just wondering if anyone else is dealing with the spinal fluid ("leptomeningeal") and it's complications. Thanks. 

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MovingOn's picture
Replies 1
Last reply 12/25/2017 - 8:19pm
Replies by: doragsda

Scans (CT or MRI) usually show two dimensions for a tumor. Is it possible that a tumor would be changing in the z-axis and the scan wouldn’t report it?

Here is my situation: I have a swollen lymph node behind my ear which has tested positive for melanoma (recurrence). In September it looked like an acorn attached to my head and my scan showed it’s dimension as 10mmx14mm. Since then I’ve had 4 Pembro infusions. My latest scan still shows the dimensions at 10mmx14mm. However, I know the tumor is small because I used to be able to sit my sunglasses on it and now it’s completely flat behind my ear.

Hopefully my next scan will come up with a smaller size. The tumor in my parotid grew. Hopefully that is pseudoprogression. And I have two new swollen lymph nodes (neck and clavicle areas). Next Pembro infusion is Jan 4th (and also going to meet with a surgeon to see if there are options to consider in that realm).

 

All in all I’m still in a good mood for the holidays!

Merry Christmas and Happy New Year!!

2018 is a new year!

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murnaloo's picture
Replies 5
Last reply 1/6/2018 - 6:02am
Replies by: murnaloo, MelanomaMike, Anonymous

Hi all,

Just looking for any similar experiences (and, to be honest, some reassurance).

Yesterday I went for a run, then came home and took a shower. While drying my hair I noticed a mole on my left arm, just above my elbow, was bleeding. I was diagnosed with Stage Ib in April 2016 (a very thin melanoma) and had a WLE at that time.

I live in London, where the health system moves very slowly, but I did get an appointment with my GP this morning. He admitted he is no expert in melanoma and because it had been bleeding it was inflamed and hard to get a good look at.

I also managed to get an appointment with a private dermatologist this afternoon, who said essentially the same thing. He said he'd remove it for me, but can't until after the first of the year.

I have an appointmet with another dermatologist (where I had my quarterly follow-ups for a year) on 3 January.

All of these doctors have said waiting until 3 January is not a problem and with Christmas and New Year's coming up, I don't really have much choice.

I'm particularly freaking out because since February I have told the dermatologists at my follow-ups that this mole didn't look right to me. Four different dermatologists have told me it's fine over the past six months. I was also just at the GP last week, seeing the GP who does specialise in dermatology, and he said the mole was fine (and it was not bleeding then). It is on the back of my arm, so I can't get a good look at it, I admit.

I made the mistake of googling "bleeding mole" and am now having panic attacks. The dermatologist today said bleeding moles are more common than you'd think and don't have to mean melanoma. Of course, given my history, he said I should have the mole removed regardless. But, again, this won't happen until early January. I'm worried I will go crazy with anxiety before then. I am in the final nine months of my PhD and I have a lot of work to do in the upcoming weeks, but I can't focus when I'm so anxious and scared. I hate feeling like this.

I don't want this to ruin my Christmas (or my husband's Christmas, as I've essentially cried since I spotted the mole bleeding yesterday).

Does anyone have any advice or thoughts they'd be willing to share on how to cope and about what plan of action I should have?

Thank you and happy holidays to all!

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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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Anonymous's picture
Anonymous
Replies 4
Last reply 12/22/2017 - 10:36pm
Replies by: Bubbles, ed williams, Anonymous, jennunicorn

  After 3 rounds of the opdivo-yervoy  treatment ( stage four)  my husband had to stop because of side effects. He was hospitalized for five days and taken off treatment until he gained some strength and weight back. He also was given steroids. When he returned for a scan three months after his hospital stay all tumors were still shrinking. No treatment was continued.

He returned for a scan this week and all tumors continue to shrink.

 I am so thankful that  the opdivo-yervoy are continuing to work.  He has stated that he does not want to start any new treatment of any kind.  I am just curious as to how long the tumors can continue to shrink with no treatment being given.  I know no one has that knowledge--I would just like some opinions and insight on what others may think!

 It would be my desire for him to take the maintaince part of this treatment but I do respect his wishes of saying no because now that he feels somewhat better he doesnt want to go through the side effects again.

 

Thank you all!

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Totally Blessed's picture
Replies 7
Last reply 12/27/2017 - 5:21pm
Replies by: ed williams, Anonymous, Totally Blessed, Janner

My husband is considered stage 1a today, no lymph node  involvement when diagnosed with nodular Melanoma back in 2015. Just recently we noticed a new mole, in the same general area of the previous melanoma (shoulder). We've also just recently moved and are now in the process of getting new doctors. His new primary noticed the mole too and said it needed to be checked further by a dermatologist due to its asymmetrical look and that it's quite dark in places  - apt all set. My question is this, is there a chance this could be melanoma from the original Melanoma even though lymph nodes were and not involved previously? What are the chances this could be melanoma? My head is spinning! He's been keeping up with  his dermatologist apts, every 4 months. This is a very new mole. 

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ajpeterson's picture
Replies 4
Last reply 12/22/2017 - 6:56pm

After a recent change of insurance companies in November, my infusions of Keytruda are no longer being covered. My Dr is switching me to Opdivo, which I've been told is very similar to Keytruda. I'm not thrilled about the change, partly because I'll be having infusions more frequently and I'm trying to maintain my job as a 3rd grade teacher.  Has anyone else experienced this transition?

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/26/2017 - 5:47pm

My Dad was just diagnosed with Melanoma.  His breslow depth is 1.1mm on the helix of his ear. Mitotic rate <1mm2. He is 57 years old.  He is scheduled for SLNB Jan 2, 2018 and MOHS surgery Jan 10, 2017.  Please ask for more information if you need it.

I am wondering if it is a high chance that it spread to his lymph nodes?  From what I am reading, it seems like a low chance, but I am just looking for more information, so I know what to expect.  Hoping for good news.  I know the waiting is hard, just looking for hope.

 

Thank you

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/21/2017 - 12:20pm
Replies by: jennunicorn

I'm a 20 year old Asian male. Three days ago, I noticed a single very faint brown line on my right index finger. Its width is probably 1 mm. Its very faint that when you look at it at different angles, it seems that it disappears. I also noticed a super slight ridge (I'm not sure how to call it) on top of this discoloration. However whenever I put a bright light underneath my index finger, I can't see any discoloration/dark spot/line both on the nail itself and the cuticle.

 

Just additional information, I'm skin type IV, no history of melanoma (or any other type of skin cancer) in the family that I know of, and currently it only appears on my index finger.

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http://onlinelibrary.wiley.com/doi/10.3322/caac.21409/full/

 

1) tumor thickness measurements to be recorded to the nearest 0.1 mm, not 0.01 mm;

2) definitions of T1a and T1b are revised (T1a, <0.8 mm without ulceration; T1b, 0.8-1.0 mm with or without ulceration or <0.8 mm with ulceration), with mitotic rate no longer a T category criterion;

3) pathological (but not clinical) stage IA is revised to include T1b N0 M0 (formerly pathologic stage IB);

4) the N category descriptors “microscopic” and “macroscopic” for regional node metastasis are redefined as “clinically occult” and “clinically apparent”;

5) prognostic stage III groupings are based on N category criteria and T category criteria (ie, primary tumor thickness and ulceration) and increased from 3 to 4 subgroups (stages IIIA-IIID);

6) definitions of N subcategories are revised, with the presence of microsatellites, satellites, or in-transit metastases now categorized as N1c, N2c, or N3c based on the number of tumor-involved regional lymph nodes, if any;

7) descriptors are added to each M1 subcategory designation for lactate dehydrogenase (LDH) level (LDH elevation no longer upstages to M1c); and

8) a new M1d designation is added for central nervous system metastases. This evidence-based revision of the AJCC melanoma staging system will guide patient treatment, provide better prognostic estimates, and refine stratification of patients entering clinical trials. CA Cancer J Clin 2017;67:472-492. © 2017 American Cancer Society.

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beans920's picture
Replies 11
Last reply 12/24/2017 - 10:31pm

After 27 doses of Keytruda and nearly a year of clear MRI/ brain scans and Pet/CT full body scans I have officially been removed from treatments.  Was a little nerve racking yesterday but when Dr. said your clean again and done with treatments my Christmas wish came true.  Lots of nurses and DRS. to thank and hope to see them only on a very limited basis.  Scans will continue every 3 mos. for awhile.  Its been a 5 year 3 mo. journey and hope its finally over.  Best wishes and Merry Christmas to everyone on this board you will always be in my thoughts and prayers.  Beans

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Hawthorne7304's picture
Replies 5
Last reply 12/20/2017 - 9:58am

Hello! I had a WLE and a SLNB on Sept 5th. While I still look like a mess, I've been assured I'm healing nicely. Margins were clear and biopsy negative. I have a 10" winding scar and still have swelling. I keep it wrapped and compressed as the scar is still very tender and sensitive. Overall though I had been feeling pretty good. For about a week I have started to have more discomfort and pain in the scar. First noticed it while sleeping. Would wake up from discomfort. I can feel small bumps that feel like scar tissue under the scar and wound area. I had scar tissue with my SLNB that dissolved quickly. Would it be normal for scar tissue to develop 3 months after the WLE? It would explain the bumps and the tenderness but part of me is nervous about recurrence and watches every little development. Thank you for any insight. 

Noel

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MelanomaMike's picture
Replies 2
Last reply 12/19/2017 - 9:33pm

Hay folks! hope this finds you all well & kickin some Melanoma Glutious Maximus!.. as i stated a few days  ago, i sucked up my 2nd delishous bag of Pembro, and boy im feeling blah! like i told another family member here at MRF, I feel like i have the beginings of the Flu everyday! not full on mind you, like the "Pre" feeling. Low energy, just all round blah. Then my weird issue with my Tattoos which i told you about, that their "raised", "bumpy" like "Braille" for the blind! lol..Pembro is obviously doing its job if its attacking my tattoos right? they arnt suppose to be there!..ill see my Oncologist soon, i plan to talk about my tiredness, im thinkin its because of "where" my tumors are located, "Lungs"...anyways, just checkin with you, i really hope everyones tumors are shrinking and or disapearing! i look forward to my 1st scan to check my progress!..

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