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
Replies 2
Last reply 8/19/2017 - 1:50am
Replies by: Anonymous

A week ago I had a mole removed and biopsied. The doctor just called with the results "Atypical Intraepidermal Melanocytic Proliferation". She said I need to return for a deeper and wider incision. What exactly does this mean (is it already cancer/ how likely is it cancer?) and how soon should I schedule the appointment? 

 

Thank you! 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/18/2017 - 9:00pm
Replies by: adrianc, Ed Williams

Hi- stage 3b and have had wide excision, snb and clnd. Started yervoy in Jan. Stopped due to uveitis. Noticed an egg sized lump about 9inches from the primary (in arm near crook of elbow). Doppler ultrasound found a solid mass with internal and peripheral blood flow. The dr ordered PET, CT and MRI. No results yet. Looking for thoughts as to what this is likely to be. Thank you. 

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jc2dad's picture
Replies 5
Last reply 8/19/2017 - 3:15am
Replies by: adrianc, Raegen, Anonymous

5 nodes removed with primary tumor on August 7th. Primary was subungual on left middle finger. Amputation at middle knuckle. Tumor was ulcerated 7mm. Took 3 nodes from arm pit and 2 from near elbow. 2 of 3 from arm pit positive, both in elbow positive. One in armpit was a little over 1 mm tumor but capsulated.

Receiving all services at MD Anderson. I meet with oncologist, surgeon and team on the 25th to discuss removal of more nodes and treatment optioms.

BRAF V600 negative, MRI and CTs negative, no PET conducted.

Any advice on different options and pros and cons would be very appreciative. The nodes by the elbow showed very light cancer with 50 and 25 cells respectively.

Is wait and watch a good approach, should I have CLND if suggested, what targeted therapies are available?

Thanks in advance.

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regansmom's picture
Replies 4
Last reply 8/18/2017 - 5:18pm

Hello. I am having a wide excision on August 23rd to remove a melanoma from my right lower leg. It is on the calf, sitting, actually on the skin over the Achilles tendon. I am a senior and I live alone. I haven't seen the surgeon and I am wonderng if anyone has had experience with similar surgery in this area and what the recovery was like. My melanoma is .3 Breslow level and Clark level 3. The biopsy margins wre positive so not sure just how deep it actually is. Thank-you for your help.

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Newmanbell's picture
Replies 8
Last reply 8/18/2017 - 3:59pm

Hi all, my husband is Stage 3b, this is his first scan after starting yervoy 5 months or so ago.  He was only able to do 3 out of 4 treatments.  It has been a week and we still have not sceen doctor, can someone please help reading this?  We are not even sure exactly where these mets are in the chest.

Head and Neck:  There is no nodal hypermetablism in the neck.  Physiological update seen in the oropharynx, salivary glands and larynix.

Thorax:  There is no nodal hpermetabolism in the mediatinum.  There are no abnormal PET positive nodules in the lungs.  There has been resection of the right anxillary node, prior SUV 5,4.  There is a prevascular node with SUV 2.9, prior 4.5.  Index right hilar node has SUV 3.5 prior 6.0.  Left hilar node has SUV 3.5 prior 3.3.  There is a stable 3 mm pulmonary nodule in the left minor fixxure.

Abdomen and Pelvis:  There is no hypermetabolism in the retropentoneum or pelvic hains.  The liver and spleen are normal in size and physiological activity.  Again demonstrated is large 4.6 cm photopenic hepatic cyst.

Mulsculoskeletal - Marrow update is within normal range.

Impression:  When compared with PET/CT of 02/02/2017 there has been resection of the right auxillary nodes.  Less FDG update is demonstrated in mediastinal nodes when compared with prior examination.  There is no evidence of PET positive disease in the abdomen and pelvis.

 

Thank you in advance for helping us with this.  One question, is this a normal reduction in size with Yervoy?

 

Donna

 

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gregisblessed's picture
Replies 5
Last reply 8/17/2017 - 11:38pm

 Diagnosed with scalp (crown) melanoma, 1.65mm depth, no ulceration, December 2015. CT and PET were clear, SLNB resulted in removal and biopsy of 11 LN, all clear. Excision of scalp with clean margins (skin graft from thigh). No issues for several months, seeing my derm every three months. Last week I have felt more tired, a little dizzy and some headaches. I have been through a tremendous amount of stress as my much younger wife recently had a stroke at 46yoa. My blood pressure has probably been elevated quite a bit so perhaps I need to consider that as a source for some headaches.

Should I be concerned about brain mets and go to my oncologist? I suspect some have had scalp mel, had it excised and lived a normal life? Perhaps I shouldn't automatically assume I have brain tumors. I am stressed so I am sure that's not helping with symptoms. I had been trying to exercise and figure out my new normal. 

I aplogize for ranting.

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I had an infected sebaceous cyst (yet to be biopsies) while on pd-1, which I've had a fantastic response to. Has anyone had this too? How did your doctor handle it? 

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I got the results of my CT scan at the end of the first 45 day cycle of the anti-LAG-3/Opdivo combo trial yesterday. I'm going to classify the results as "mixed."

When evaluated using the RECIST 1.1 protocol I have been classified as having "stable disease." There are two "target" lesions. One grew by 7% and the other was unchanged, as measured using that protocol. So that fits the qualilfications for stable disease. But two other, "non-target" lesions were classified as " more prominent.

Looking at the standard radiologist report of the scan, there is currently no cancer in any of my organs, which of course is good news. The lung nodules that were killed by Keytruda are gone and nothing new has taken their place. But several lymph nodes in my chest are all larger. I am hoping that is due to something like t-cell infiltration. I didn't see Dr. Sharfman yesterday, I saw the nurse practitioner instead. And she told me that is certainly possible, and added that I am "still very early in the game."

So yesterday I received the first infusion in cycle 2. I have a ton of questions for Dr. Sharfman in two weeks, mainly how I should be feeling about these results. One bit of good news: my lipase has returned to normal. I guess I'll have a clearer picture of everything around the beginning of November.

-Bill

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Good morning,

A research firm has reached out to the MRF seeking input from advanced melanoma patients who have experienced gastrointestinal symptoms while on checkpoint-inhibitor therapy. Interested patients who are eligible and selected to participate in the one-time interview study will be compensated for their time. For more information about the study, please call Evidera and ask for Julia Ingram at 240.235.2502.

Sincerely,
Adam, MRF

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/17/2017 - 1:34pm
Replies by: Anonymous, SABKLYN

I don't know if it's the right place to post something like this but I'm really confused about this and want to put my mind at ease.
I have two scary moles removed before 6 months from my left leg and lower back. well, the results came back fine which final diagnosis says benign compound nevus with no cytoarchitectural atypia present. I was relified, but for the last month I'm feeling a little swelling in left leg. It's not obvious but my left knee feels fatter than than the right I'm really scared that the pathologist missed a melanoma and now it spread to my lymph nodes. Is it possible?. the two moles apperead during my pregnancy and were new. What I can do to be in the safe side?

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I wanted any input on this chemical known as Dioxin. Im a child of a Vietnam Veteran who was exposed to quite a bit of it, it was  knicknamed "Agent Orange", Agent Blue" Agent Pink" etc. because,  well, Agent because it was a "chemical" that produced an effect,  and the Orange Blue Green  Pink  etc.was the color of the particular "barrels"  it showed up in {randomly}...Just a thought...Mike

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MelanomaMike's picture
Replies 4
Last reply 8/18/2017 - 2:34am

Hi Y'all, well, i saw my Oncologist yesterday and i came to the decision {with her as well} to just do the damn surgery. Like ive stated in my introductory post when i first knocked on your door here at MRF, I was {and still am} so done with surgeries! my original personal plan was to do something different {Chemical Therapy, Imm Therapy etc. cuz obviously surgeries arnt doing the trick {tumors come back every 2 years on average} so, i thought do that. Then my last surgery point "opened up" my left leg shin area {i squatted down & it tore open} and just that alone would delay any therapy for atleast another month. So, i said screw it! this way the tumor is  taken out in a matter of "hours" versus a possible year with  Chemo/Imm approach. And of course the added benifit of knowing "exactly" what it is & what where up against if therapy "is" still needed {most likely}...i dread the surgery I really do! and thats what my whole fuss has been about!i would have already started Interferon or whatever if it wernt for tearing open my leg! maybe a sign from God? ya never know...Thanks for allowing me to share my update w/you and hope yer all doing good or atleast stable..love/respects Mike,,yes

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Nemesis's picture
Replies 5
Last reply 8/19/2017 - 10:11am

T1b here, 9 months post WLE and SNB. My melanoma was discovered during my post partum period (6 months after giving birth). I am not sure if a second child is off the table for me at this point. I want to wait for two years before trying to conceive, but I have read studies that say melanoma is worsened by pregnancy, therefore I am not sure if I should even risk it.

What would you do in my shoes?

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baesill's picture
Replies 4
Last reply 8/17/2017 - 6:06pm
Replies by: J.bun, jrtufo, Anonymous, lindanat

Hi everyone,

So I'm about to start this combo and I feel really confused about the sun sensitivity thing. It sounds like I can't let sunlight hit my skin...ever....even with sunscreen. Do I just have to stay inside now? Is it possible to go swimming outside? Or can I take my kids to the park? 

How do people adjust to this?

thanks for the support everyone!

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Bradley75's picture
Replies 4
Last reply 8/15/2017 - 10:26am

I am about two and a half weeks post op from having a tumor removed from near my spine.  The tumor was located at T-5 and was about 2 inches.  It had grown into a nerve and some bone so the surgery involved cutting a nerve and grinding some bone.  All in all things went really good.  Recovery has been painful, but it is getting less by the day.  Tomorrow is a big day with stitch removal, radiation simulation, and starting Keytruda once again.

Now for the strange part.  I have been on Keytruda for a few months.  It worked well on my lung mets, but it wasn't stopping the T-5 tumor/  When the surgeon got to it, he said it was like "snot."  I had never heard of that before.  I asked several questions of my medical team about that and the best I can tell is that the Keytruda had softened the tumor.  He said it makes it easier to remove more when it is soft because they can use suction to suck it out. 

I am sharing this because my PET showed no real sign that the Keytruda was working on that tumor.  However, when they got in there during surgery, it appears the opposite is true.  I find encouragement and new hope here.  The Keytruda was doing more than they could detect with MRI and PET. 

Keep Fighting,

Brad

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