MPIP: Melanoma Patients Information Page

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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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MelanomaMike's picture
Replies 7
Last reply 12/15/2019 - 9:23am

Hi yaall, yaay its Friday,!! even though it all feels like a Friday to me everyday haha...if ya all get bored, heres my last CT report, ya, the one that might get me booted off my trial! Fingers Crossed!! ya guys...


DATE OF SERVICE: 12/2/2019

COMPARISON: 9/25/2019

RADIATION DOSES: CTDI VOL (1): 3.91 mGy; CTDI VOL (2): 8.25 mGy;
DLP: 1191 mGy-cm

PROCEDURE: Multiple axial CT images were obtained from the skull
base to mid thigh before and after the administration of 100mL of
Omnipaque 350.

NECK: The skull base is unremarkable. The previously noted
air-fluid levels within the bilateral maxillary sinuses has
resolved. The nasopharynx, oropharynx, hypopharynx and larynx are
unremarkable. The salivary glands are unremarkable. The thyroid
gland is unremarkable. No enlarged lymph nodes are identified.
Scattered subcentimeter bilateral cervical lymph nodes are noted.
No focal osteoblastic or osteolytic lesion is identified.

CHEST: The trachea and central airways are patent. Linear scarring
or atelectasis is seen within the left lower lobe. There is
evidence of a prior right lower lobectomy. No new, suspicious
pulmonary nodules are identified. There is no pleural or
pericardial effusion. The heart is normal in size. Aortic
calcifications are seen consistent with atherosclerotic vascular
disease. Coronary artery calcifications are seen. There are
multiple, prominent mediastinal lymph nodes again seen seen, with
a rounded contour, concerning for nodal metastasis. For example, a
right paratracheal lymph node measures up to 0.7 cm, unchanged as
compared to the prior examination. Additionally, there is
increased size of multiple prominent and mildly enlarged left
axillary lymph nodes concerning for nodal metastatic disease. For
example, a left axillary lymph node (image 21) measures up to 1.1
cm compared to 0.7 cm on the prior examination. There is increased
size of 2 subcutaneous nodules seen within the left chest wall
(image 37 and 30), the largest now measuring 1.1 cm compared to
0.8 cm on the prior examination. No focal osteoblastic or
osteolytic lesions are identified.

ABDOMEN/PELVIS: The liver, spleen, pancreas, adrenal glands and
gallbladder are unremarkable. A small right renal cyst is seen.
The kidneys otherwise demonstrate symmetric enhancement without
evidence of hydronephrosis. There is increased size of a
heterogeneous soft tissue mass seen arising from the sigmoid colon
(image 106) now measuring up to 4.7 cm compared to 4.0 cm on the
prior examination. This mass remains contiguous with the lumen of
the sigmoid colon. The prostate gland is not enlarged. Aortic
calcifications are seen consistent with atherosclerotic vascular
disease. No enlarged lymph nodes are identified within the abdomen
or pelvis. Surgical clips are seen within the left inguinal
region. There is increased size of a centrally necrotic mass seen
within the left abdominal oblique musculature (image 79) now
measuring 6.0 cm compared to 4.5 cm on the prior examination.
Additionally, there is a stable 1.1 cm enhancing nodule seen
within the right gluteus musculature (image 107) concerning for
metastasis. No focal osteoblastic or osteolytic lesions are

1. Increased size of a centrally necrotic mass seen within the
left abdominal oblique musculature consistent with metastasis.
2. Increased size of two subcutaneous nodules seen within the left
chest wall consistent with metastasis.
3. Increased size of a heterogeneous soft tissue mass seen arising
from the sigmoid colon, which is contiguous with the lumen of the
sigmoid colon, favored to represent a colonic metastasis over a
primary colonic malignancy.
4. Increased size of left axillary lymph nodes consistent with
nodal metastatic disease. There are stable prominent, rounded
lymph nodes within the mediastinum also concerning for nodal
metastatic disease.
5. Stable enhancing nodule is seen within the right gluteus
musculature concerning for metastasis.
6. Status post right lower lobectomy.
7. Postoperative changes within the left inguinal region.
8. Atherosclerosis, including coronary artery calcifications.

Reviewed and Interpreted by: Pareen Mehta 12/2/2019 12:28 PM

Melanoma Will Not Beat Me or my MRF Family!

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chelstarr's picture
Replies 7
Last reply 12/14/2019 - 11:11am

If melanoma has spread to inguinal lymph nodes, will they eventually swell?

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chelstarr's picture
Replies 2
Last reply 12/19/2019 - 11:31pm
Replies by: Anonymous, marta010

Please give insight. This is a bit confusing, but hang with me. Approximately 16 months ago, I developed a mole that was itchy on my left knee. I immediately became anxious about it and used topical iodine and removed (almost all of )it myself. Before it was completely gone, I realized this was not a good idea, and went to the dermatologist, who said what was left of it looked like a sebboreic keratosis and she froze the rest of it off. Immediately following that, I started developing pain in that leg. I was very anxious about it and eventually had the area where it was removed re-biopsied 3 times, all of which just said "scar" as the results. Ever since then, I have been very anxious about melanoma. 4 months after that (in Nov 2018), I noticed a small little bump (tiny, like maybe a tiny bit larger than a pin point) on my forearm, like under the skin but at the area of the bone. I can kind of move it around. I was very anxious about it and had an ultrasound of it in Feb of 2019 which said they could not see any mass. Then, in July of 2019 I had a CT of my abdomen and pelvis done to see if there were any swollen lymph nodes in my groin, which there were no swollen lymph nodes in groin or abdomen. That provided me with some reassurance. But now the little nub on my forearm is starting to bother me...meaning there is some pain there once in a while. I have had 3 doctors check out the little bump and none of them are concerned. Anyway, what are the chances that this bump is metastatic melanoma, if none of the lymph nodes in my groin looked suspicious of any kind of metastatic melanoma? Also, it has not seemed to grow at all in over a year. Please give your (kind) feedback. I realize this whole process was not a good way to go about it. I was anxious and pregnant at the time. Obviously, I am still anxious about this. Thank you.

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sks2019's picture
Replies 1
Last reply 12/15/2019 - 1:41am
Replies by: Tsvetochka

Providing an update for my mom and seeing if someone on this board xpereinced this. After 3 rounds of ipi/nivo my mom has been in ER multiple times with 3-4 day stays each time. Finally getting diagnosed with acute cholecystitis from an Ultrasound. Only change in one of her tumours is going from 1 cm to 4cm after 3 infusions and then reducing to 3.8cm 3 weeks after third infusion. She has no energy to be by herself. Only distance she can walk is from bedroom to bathroom. Lost 20 pounds in 4 weeks . She was a very healthy person before the last infusion on Nov 9. Please pray the medicine is doing something for her as she is going through alot these days. Anyone else experienced here cholecystitis ?

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ed williams's picture
Replies 3
Last reply 12/17/2019 - 11:51pm
Replies by: lkb, mrhubahuba, Bubbles

If you haven't joined Onclive they might ask you to sign up to read the article, no cost or spam afterward and it is a sight set up for oncologist with videos and articles from all the big conferences.

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Kevcurry's picture
Replies 2
Last reply 12/14/2019 - 8:51pm
Replies by: lkb, tedtell1

Hi everyone, recently I went to a podiatrist and he performed a 4mm punch biopsy on the second toe of my left foot to diagnose nail melanoma (had a black line in the middle and feint brownish bands that cover the black line for about 2 years). I really thought he knows what he was doing and I was hoping that he used a nail spatula to reflect the nail fold and collect the tissue sample (pigmented lesion) from the now exposed nail matrix but after I got home and looked at the toe, he actually did the punch biopsy on/over the proximal nail fold after nail avulsion. He also confirmed that with me. The pathology report says the tissue sample was: skin (4mm x 3mm x 2mm) and the diagnosis was :benign acral melanosis." Since it was only 2mm thick, I'm not sure if the punch tool was able to collect tissues from nail matrix (where subungal melanoma originates). I read from this website, and is says, "“Do not use a punch biopsy on the nail fold to diagnose melanoma – you will get a false negative,” Dr. Skelsey said." I really don't know if the podiatrist got the tissue sample from the the nail matrix or not. It seems this doctor wasn't qualified for nail matrix biopsy? I called him and he said "since you have doubts, best thing to do is get another biopsy." It has been about a month since the biopsy and he wants another biopsy. I don't think the nail matrix is fully healed. I wonder if the pigmented lesion in the nail matrix is still there? I don't have health insurance and I already paid him and the pathologist a lot of money for perhaps, a botched biopsy :( Maybe, the pathologist was looking at the tissues from the nail fold hence, it was a false negative? So worried right now. If I want a second opinion, how long do I have to wait before I can have another biopsy? Thanks for any input. I'd really appreciate it.

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Coragirl's picture
Replies 6
Last reply 12/16/2019 - 3:06pm

Hello all, I just have a quick question. My husband stopped his treatment with Opdivo back in March due to pneumonitis. His symptoms have been improving and he is seeing another doctor to help get his lungs feeling good again. On his last scans it showed he may be developing colitis, at scan time he didn't have symptoms but he does now. Could this still be effects of immunotherapy?

Amie Taylor

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amberstewart's picture
Replies 3
Last reply 12/17/2019 - 2:16pm
Replies by: ourvan, Bubbles, jetdoctor67

Hi! I had a 0.3 mm melanoma removed in June of this year. I went to my derm for a follow-up skin routine. They asked if I would be interested in having DermDX testing done. From what I understand, it tests your biopsy site to see if you are high risk or low risk for metastasis. Does anyone have any experience with this? My worry is that it will come back as high risk for metastasis I’ll have severe anxiety. I had so much anxiety after the initial diagnosis, but it has gotten better over time. My doctor explained it as a test to see treatment/how closely they monitor me. Any advice from anyone who has had experience with DecisionDX?


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mandyjill's picture
Replies 5
Last reply 12/12/2019 - 10:16am

I don't post too often, but keep up with all y'all. Had my quarterly scans and oncology visit today, and got the all clear. Woohoo!. I participated in a clincial trial of Opdivo and Yervoy for Stage 3B and finished the infusions a year ago this past August. My prayers are with you all that we can all beat this disease.

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Edwin's picture
Replies 16
Last reply 12/22/2019 - 7:37pm

I had a PET scan on Wednesday December 4 and received Opdivo immunotherapy today.

From the PET scan report:
1. The whole-body disposition FDG is physiologic.
2. Previous study showed mild activity in left parapharyngeal lymph node. This has normalized.”

“Physiologic” means normal [NED].

PET scan SUV maximum of lymph node under my left jaw.
3.7 2018 April
4.2 2018 September
4.0 2018 December
3.2 2019 March
2.6 2019 July
2.0 2019 December ( “activity at background levels” )

The increased activity under my left law in September 2018 could have been disease progression. I skipped two 240 mg infusions of Opdivo, so I could have cataract surgery in both eyes in August 2018. The increased activity could have been pseudo-progression due to healing after radiation. I received radiation to that area under my left jaw in April and May 2018. Since the activity has decreased, I assume the increase to SUV 4.2 was pseudo-progression.

Dr. Anu Gaba has been my oncologist since September 2014. I have been receiving immunotherapy since November 2015. In March 2016 I had melanoma in several bones. Pembro immunotherapy had failed. I began ipi + nivo immunotherapy on April 1, 2016. My bone cancer disappeared. Then a tumor appeared under my left jaw. Dr. Gaba plans to stop immunotherapy in May. She bases her plan on recommendations of Dr. Jeffrey Weber.

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jennifer83's picture
Replies 6
Last reply 12/12/2019 - 9:05am

Just a melanoma update!

I had my first ipi/nivo infusion on 11/30 and a lot of my subcutaneous lesions are shrinking (not per a doctor, but I can see and feel this myself).! I have a lot of under-skin metastasis and many of my lumps have come down in size significantly. I wish this is something to be hopeful for! Praying that it's also shrinking the masses in my liver and lungs.

I have developed the ipi/nivo rash - it's mildly itchy and just a little unsightly.

My biggest concern are these new masses that have developed on my scalp. I have about six new growths that are odd - different than my other lumps. They almost look like blisters, but they're solid. They itch, as well. I've done some googling, but haven't seen anything related to it. If anyone has thoughts on it, I'd love to hear.

So far, I'm managing work just fine and feel pretty well.

Fighting alongside you all - Jennifer


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sing123's picture
Replies 5
Last reply 12/12/2019 - 8:41am
Replies by: Bubbles, MelMel, lkb, Coragirl, JudiAU

I haven't been on in a while. Feeling sad for recent news of HappyGal's family, and greatly hoping that you, Mike and Mark R, get some HAPPY news soon that will turn your health back around. Thought I'd pop on and share something hopeful. I am still NED more than a year out now from my recurrence.. Doctor used the word CURE! Well, gotta get back to my wedding planning. In two weeks, I'll be a married lady again. Fiance jumped back in my life at the start of my cancer journey, wouldn't quit me as they say in the world of old blues, and here we are. Life is wondrous, and I'll never take it for granted again.

I hope everyone is surrounded by love and peace in this holiday season.


Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo, finished Opdivo in March 2019

I'm Still Here!!!

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Zozi86's picture
Replies 1
Last reply 12/15/2019 - 6:56am
Replies by: Nicky

Any experience? I’m frightened.

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Roberto's picture
Replies 6
Last reply 12/10/2019 - 11:31am

Hello everyone. I was out of this forum for a while taking care of my wife who went through an isolated limb infusion. Just a palliative treatment to try to prevent leg amputation. Well, has anyone ever heard about using a drug called Levantinib in conjunction with pembrolizumab to treat melanoma? Levatinib is an approved thyroid cancer drug but is currently under study for the treatment of melanoma. My doctor came back from a congress in Europe and said that everyone was very enthusiastic about the potential of this drug also for the treatment of melanoma. There are several studies of this drug for various types of cancer, including melanoma, and it seems that the preliminary results seem to be fantastic, according to my doctor informed me.

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Oyoy's picture
Replies 3
Last reply 12/12/2019 - 1:18am
Replies by: lkb, QuietPoet, JudiAU

First off, I know this is a typical problem and don’t really know how to stand out from others. Sorry about that.

So, I have a mole. It is somwhat multicolored, unsymmetric and has irregular bordets. I’m pretty sure I’ve had it for years, but I don’t know if it has always had these atypical features. For some reason I started to worry a bit back in August, and went to see a doctor who wasnt’t too concerned and said to observe it and come back if it changes. It has not changed since then.

A week ago I suddenly startes worrying again. I now have dentological imagets being analyzed, and I have an appointment to get the mole removed. During this past week however, I’ve started getting all kinds of symptoms. There are pains close to my armpits, both tenderness on the sides of my ribcage right underneath the armpits, as well as a lot of (but relatively weak) random pains that just comes and goes. There’s also some similar pains i my neck and throat, tingling and weird sensations all over. I understand that this all coming rapidly right after I started freaking out in the first place is a pretty clear sign that there is something psychogenic going on. But how can I convince myself that it’s not melonoma that suddenly startes spreading and in a matter of days have given symptoma in all my lymph nodes (and other places)?? Is such a rapid spreading even possible? Urgh.

I guess there is not much for people here to do about it, but at least it’s nice to vent I suppose.

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