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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SarahBug's picture
Replies 1
Last reply 4/24/2020 - 7:00am
Replies by: SarahBug

Hello all, I am new to melanoma, but have had a few BCCs and MOHs procedures in my time. I am seeking your wisdom and experience.

History of this newly diagnosed melanoma:
During full body scan August, 2019. Derm noted unusual pink spot on right forearm, took a photo of it, and said if it's not a "bug bite" and doesn't heal up we'll watch it.
I kept an eye on it all winter: flat, pink, a little patchy, not huge.

Fast forward to March, 2020: Over four weeks it seemed to become pinker, raised now (puffy with a palpable lump), with a distinct and tiny "bug bite" hole at the top of it. Went in last week, derm said it didn't seem to have changed much, but would do a shave biopsy cause she would be really surprised now if it wasn't a BCC or SCC. I said, what if it's a melanoma? Would a shave then not be indicated? She said due to COVID19 situation, and of not wanting me to chance virus exposure coming in for a second treatment visit next week, and because she would bet her life on it being a BCC or SCC she'd go ahead with a shave and then an ED and C (electrodessication and cutterage) to finish it off so I wouldn't have to come back in again. Of course, I said OK (I have seen this derm for 25 years and she's never steered me wrong).
Pathology report:
Clinical Data: A: Morphology: erythematous indurated plaque


Multiple levels reveal an elongated specimen which is focally ulcerated and covered by fibrinopurulent crust, associated with dermal collagen degeneration. There is a broad and irregular proliferation of hyperchromatic and pleomorphic melanocytes in a confluent pattern along the junction focally within the papillary dermis at a thickness of 0.2,,. There is severe solar elastosis. There is a patchy lymphohistiocytis infiltrate.

Questions for anyone who can speak to this: Lentigo maligna melanoma is a pretty rare subtype that usually arises from a brown, spreading patch. Mine was small, and pink and did not present typically, hence my dermatologist's shock when she had to call me with the news.

1) Anyone out there with a lentigo maligna melanoma that presented atypically? If so, what was your experience?

1a) Also curious about "Desmoplasic Melanoma" and its association with Lentigo Maligna Melanoma, if you have any experience (as that is an amelanotic pink lesion? that has gone undiagnosed???)

2) What does ULCERATION PRESENT, BUT LIKELY TRAUMATIC mean in the scheme of things?

3) Was this able to be staged because the pathologist was able to read the deep margin, even though it was a shave biopsy?

4) Do you think that ED and C treatment after the shave biopsy messed up my clinical path much?

Any and all comments, including your general interpretation, on this path report and your experience will be helpful. Of course, I will be talking with my doc soon, but wanted to get this board's collective wisdom.

Scheduled for MOHS surgery, late April.

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Redstar.20's picture
Replies 6
Last reply 4/25/2020 - 11:48am
Replies by: Redstar.20, maryb-z, Bubbles

Hello! So a little background, first diagnosed with malignant melanoma 3yrs ago, came back in January. Habe had surgery and I stage IIB, intransit metastatic recurrence. I started Opdivo infusion March 20th. My oncologist wanted to focus on the sunshine and roses of Opdivo, as most people on Opdivo have little to no side effects. After the first round of treatment, I had rash from chest to face, all over deep tissue itching, exhaustion, muscle aches, swelling in hands and joint pain in hands, at times there was shooting pain down my arms and legs with on and off numbness/tingling, swollen lymph nodes, and hair thinning. All of these side effects were livable, and I treated the symptoms. My best week was the fourth week, the week before my next infusion. At my infusion the oncologist and I decided to try doing a half dose to see if lessened the side effects. About 4.5 hours after completeing infusion number 2 I became very hot, sweating, clammy, shaky, dizzy, headache, nauseous, head spinning. After lying down for about an hour my side effects eased up a bit so I knew I didn't need to go to the ER. The next day I was still experiencing the headache, nausea, dizziness, head spinning so I reached out to the oncall oncologist, and we decided to try treating the symptoms instead of doing prednisone that would cancel the Opdivo effectiveness.
The anti-motion sickness medication helped take the edge off, and I felt better as long as I did very little.
Today I called my primary oncologist to get a prescription for something strong, so I could work etc. My oncologist said she could write a script for the nausea, but she is concerned that if we treating the side effects and continue with the Opdivo, that next time I could have an even worse reaction and that may be we shouldn't go forward with the infusion. I am at a loss. Are there other alternatives to treat the cancer? Has anyone experienced these kinds of reactions on Opdivo?
Could use some advice from experienced cancer warriors.

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Megs Melanoma 2nd round's picture
Replies 5
Last reply 4/26/2020 - 8:31pm

Hello, with in the last 48 hours my Jackson pratt drain was removed due to me catching the tube on my bathroom door handle and tearing a suture. Im having fevers (100.7) and pain right above the drain hole. The area is hard when I touch it and I am feeling faint or dizzy. I have contacted my doctors, the on call doctors and have been told to keep taking Tylenol. The tylenol breaks the fever for 4 hours and then it returns. I know in my gut that there is fluid build up and my body is trying to fight it and can't due to not having lymph nodes in the armpit as of 16 days ago. Im also having what looks like Folliculitis and have been prescribed an antibiotic cream Mupirocin 2%. My concern is more the fevers and body aches. Has anyone experienced this after having ANLD?

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Steve33's picture
Replies 12
Last reply 4/27/2020 - 10:09pm

I’m stage 3B and began on Opdivo in Dec 2019. The blood test 1 month after first fusion showed my thyroid is producing too much T4F. My oncologist referred me to an endocrinologist who said we might have to switch agents if thyroid level doesn’t come down. Symptoms are loss of weight, rapid heart beating, and constantly feeling “on the edge”. I am on a beta blocker to reduce blood pressure ( I am an otherwise very healthy/fit 33 year old). Has anyone had similar issues with Opdivo? How was it managed?

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Replies by: Beany, MelMel, ed williams

Hello everyone,
I am still in hospital waiting for my liver enzymes to fall while taking 35mg of prednisone daily.
AST has dropped down to 95. However, ALT is is stubborn and holding steady at 354.
Could the nivo/ipi be winning the battle keeping the level high?
I have achieved good tumour reduction in lungs and liver.

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boatski's picture
Replies 2
Last reply 4/28/2020 - 10:19am
Replies by: boatski, chrispl1974

Hey all,

I've been reading a lot on here but decided to enter the conversation. I had a whirlwind Diagnosis. In Nov I had a skin check and nothing was exciting. In January I noticed a new nodule on my ear. It grew pretty quickly and I finally got into the doctor in mid February. The Derm said it was not likely to be anything but did a deep shave biopsy (first biopsy ever as a 31 M, so had no idea otherwise). Got a call 4 days later that it was aggressive nodular amelanotic (not pigmented) melanoma. Was rushed to appointments with oncologist and surgeon who does a ton of neck dissections. Had an MRI, CT, bloodwork and chest x-ray. All came back good. Had a WAE on March 12 with 4 nodes in the SLNB. Got the good news that they all came back negative. Officially I am in 2b now. However I'm really quite on edge. My pathology (below) indicates that I just about as high risk as possible. That in combination with the ear location is making me paranoid (and I'm told rightfully so). Anyone been through this? I know that it could be that nothing else happens but it just seems like a very high risk situation. I'm looking at a nivo clinical trial but may not qualify depending on when it reopens from COVID. Being stuck at home is making me stew more than I should be. I'm working with a counselor but it's still hard to get over anxiety that has a legitimate source haha.

Mitotic rate -11
Depth - 3.5 (at least, I'm told it was 3.5 but I was told at least 3.5 with shave)
Ulceration - positive
Lympohvascular invasion - positive

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Anonymous's picture
Replies 9
Last reply 4/28/2020 - 12:47pm
Replies by: magdalena, drew5, Janner, Becky, Anonymous

My baby was just diagnosed with Spitzoid Melanoma on Wednesday. He is at the Huntsman Cancer Institute with Dr. Andtabackca. His surgery will be August 5th but on August 4th they will inject a radioactive dye into his tumor site on his back. They have not given a stage yet. Is that to be determined after the surgery? He had had the tumor for a year and half. The pediatrician thought it was a wart at first, but then it never went away. Any advice on what I should be doing to help my son. I don't want to reinvent the wheel, so any words of advice/encouragement will be gratefully welcomed!

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Wildcat99's picture
Replies 7
Last reply 4/28/2020 - 9:52pm

Hope everyone is doing well. I'm a newly diagnosed stage 3b. I had a neck dissection 4 weeks ago to remove a golf ball sized growth on one lymph node and had many others removed (all of the others were clean). Plan is to lay low another few weeks given Covid and then regroup to discuss treatment options again. After initial meetings, I'm probably headed down the Opdivo path. My question to this group is regarding the use of radiation in the neck prior to receiving Opdivo...the doctors tell me it helps prevent the melanoma from coming back in the same area but doesn't improve OS rates. So I'm trying to figure out if it makes sense to get radiation given the potential side effects. Any thoughts/advice would be much appreciative. Thanks for reading my post. Take care.

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Anonymous's picture
Replies 10
Last reply 4/28/2020 - 9:58pm
Replies by: Anonymous, Butterfly74, ed williams, doragsda, chrispl1974

Hi I have recently been diagnosed as Stage 1a with depth of 0.7mm, no ulceration and zero mitosis. But my Clark Level is 4 which I am so worried about. From everything I have read this is a high risk factor for it spreading at some stage. I probably shouldn't read so much on the internet as it makes me so anxious and I am really struggling to deal with everything. There seems to be a lot of people who were stage one and are now stage 3 and 4. I'm hoping some people can help me please.

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Sdmotorcop's picture
Replies 5
Last reply 4/29/2020 - 2:18pm
Replies by: Edwin, Bubbles, sandyd77, BillB

After I advanced from a 3C to stage IV, my oncologist had me stop taking Nivo (I had 10 of 12 infusions). He then started me on IPI (first dose last Friday). I asked him why he wasn’t giving the IPI in combination with the Nivo. He told me it was obvious the Nivo had not done it’s job and wanted to approach it from a different angle.

My question is this... will I get the benefits of a “combo” without actually having both meds administered at the same time? Does the Nivo that I’ve already had continue to work without having more infusions?

Thank you for any insight



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caman's picture
Replies 5
Last reply 4/29/2020 - 5:24pm
Replies by: caman, ed williams, Bubbles

Hi fellow warriors,

Just finished my first month on Keytruda, and results are real good. The tumor on my neck shrunk significantly, there's hardly anything left of that little animal.

But I been reading about on PDL1 expression and its use as a prognostic indicator. 50 percent and above is a real good indicator immunotherapy will be effective and the prognosis is much better.

Mine was 5 percent. My doctor said that's good enough. He also said depending when the expression was taken, before immunotherapy or after, the percentage would be different. If done after, the percentage would be higher. Mines was taken before. Anyone else here have any experience with this you can share? Thank you!

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Hello everyone,

Hope you are all OK during the chaos cuased by the virus.

Anyhow, my ALT (330) and AST (110 ) are stubborn and went up by 20 and 22 respectively, so the liver specialist will go from 35mg of prednisone to 55mg and then taper off by 5mg per week. It should bring those levels down, but I am disappointed at the prospect of another three weeks here. I have been here for two weeks already. I guess I am lucky to get admitted to hospital while the virus is going around. Ah well, at least the tumours are shrinking! I just hope the response continues.
Thanks in advance to Melanie for the warning! You were right.
I haven't really had side effects from 35mg but imagine 55mg will bring some side effects. I hope I don't get hungry as the meal portions here in Japan are not exactly big! No snacking either because of glucose level risks!

All the best,

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THMoore's picture
Replies 8
Last reply 4/30/2020 - 5:17pm

I am newly diagnosed with melanoma stage 3b. I was brushing my teeth and noticed a lump on my neck. I knew immediately something was wrong. I know my body. I was injured when I was 16 playing football. I am a incomplete quadriplegic. I use a wheelchair and scooter to get around. I went to 3 doctors that misdiagnosed me before going to MD Anderson. I ended up having surgery to remove the tumor from my parotid gland. It wasn't until frozen sections were performed during surgery when I was officially diagnosed. 31 nodes were removed from my neck and 5 from my parotid gland. All were negative with the exception of the single cancerous lymph node. There was no primary tumor. I am currently receiving radiation and afterwards they want me to take immunotherapy. Being disabled, I am extremely scared to take Immunotherapy because I am don't know if my body can handle the side effects. The oncologist says I can do it. Easier said unless your a quadriplegic.

My questions are does anyone have or have had the same diagnoses. Unknown Primary and Melanoma of the Parotid Gland? If so, what actions were performed? Do you think I should take immunotherapy or a wait and see approach? Everything I read scares me to death.

I would appreciate any words of encouragement and experiences encountered..


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boatski's picture
Replies 4
Last reply 4/30/2020 - 5:38pm
Replies by: boatski, sj, SABKLYN

Hey all,

You can see me last post for details on my brief melanoma experience. Basically I am 2b (ear) with Negative SLN. It was found in February and surgery was early March. These past several weeks I've had very mild headaches. They sound completely opposite of what I've read about, they typically are better in the morning and get worse in the evening. Advil doesn't seem to help, but I was on it for most of March because for some reason my body didn't like stronger opioids post surgery (couldn't sleep haha). Caffeine does seem to help some. I'm chalking it up to stress because there does seem to be a high correlation with stress/anxiety and headache intensity. It varies from about a 1/10 to 2/10 on the pain scale. I have no other symptoms. My surgeon and onc suggested that it was unlikely Melanoma in the brain. I am getting an MRI tomorrow (last one was less than 2 months ago).

I know this is pretty strong paranoia, since I just had an MRI, the symptoms don't seem to be typical of a brain met from what i've read, and I'm only stage 2. But I'm curious if others have experienced a quick just from stage 2-4. Partially just trying to stay engaged with something as my work is currently very slow with virus and I have far too little to do at the moment.

I've also tried numerous anti-anxiety medicines and they don't appear to have an impact. Even the strong stuff doesn't seem to reduce anxiety.

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KAP715's picture
Replies 9
Last reply 4/30/2020 - 9:06pm

Had a recurrence in my neck 9 months after a neck dissection and adjuvant pembro obviously hasn't worked for me. I have a subcutaneous tumor right underneath the incision from my previous surgery. Can anyone share their experiences with T-VEC? That's what my onc is recommending for the next phase of my treatment. Unfortunately PD-1 immunotherapy isn't working for me.

Diagnosed stage 2 Oct 2014. Stage 3b May 2019.

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